Still think gluten sensitivity isn’t real?
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Still Think Gluten Sensitivity Isn’t Real?

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Catchy media headlines often poke fun at gluten sensitivity, and a considerable percentage of the population, including many doctors, still do not believe that non-celiac gluten sensitivity is real. Yet many people without celiac disease feel better with a gluten-free diet. A recent study may have settled the debate once and for all.

is gluten intolerance real
Some say gluten sensitivity isn't real, but a new study proves them wrong. istock.com/agcuesta

While the scientific community has widely accepted celiac disease as a condition caused by gluten and other related proteins, non-celiac gluten sensitivity has remained a topic of heated debate in the media and among the general public.

In this article, I’ll talk about the reasons I have acknowledged non-celiac wheat sensitivity as a real condition for many years, and I’ll describe the results of a new research study performed at Columbia University that adds supportive evidence. Before we jump in, though, let’s review the difference between celiac disease and non-celiac wheat/gluten sensitivity.

Celiac Disease vs. Non-Celiac Wheat Sensitivity

Celiac disease and non-celiac wheat sensitivity are two distinct conditions, with a few major differences.

Celiac disease (CD) is an autoimmune disease characterized by an inflammatory immune response to wheat gluten, rye, barley, and related proteins. It results in marked disruption of normal gut tissue structure, including atrophy of epithelial cell projections called villi and an enlargement of intestinal crypts where new epithelial cells form from stem cells. CD is strongly associated with the haplotypes DQ2 and DQ8 of the HLA gene (1). In terms of blood markers, transglutaminase 2 (TG2) autoantibody is considered the most sensitive marker for celiac disease (2).

Non-celiac wheat sensitivity (NCWS, and also called non-celiac gluten sensitivity) is a term applied to individuals who experience symptoms in response to wheat or gluten ingestion but lack the characteristic markers of celiac disease. Symptoms can range from GI discomfort to fatigue and other neurological issues. These people tend to improve on a gluten-free diet (3). Unfortunately, many are mocked or ridiculed for avoiding wheat and told that their sensitivity is “all in their head.”

New research confirms gluten intolerance is real—and the haters are wrong.

Wheat Sensitivity: Is It All in Your Head?

In response to continued suggestion by the media and some of the medical community that wheat sensitivity is merely psychological, I have written extensively on my blog in support of NCWS as a real condition. For one thing, a variety of different proteins in wheat can elicit an immune response beyond gluten. NCWS might even be more serious than celiac disease, as many people who test negative for celiac disease continue to eat wheat and put themselves at serious risk for developing autoimmunity.

Gluten free is not a fad, and self-reported NCWS has been associated with a wide variety of disorders in epidemiological studies. Those who claim that gluten sensitivity isn’t real often cite this study, attributing any negative reactions to gluten to FODMAPS.

However, as I addressed in a previous article, the researchers chose whey protein for their control group, a pretty poor choice considering that many of their subjects likely had inflamed guts and multiple food sensitivities. The evidence, both on paper and from my own clinical experience, clearly points to the existence of NCWS.

The Latest Research Study

Still not convinced? In a recent study, researchers at Columbia University Medical Center sought to obtain objective evidence to determine if NCWS is real (4). They enrolled 80 individuals with self-reported non-celiac wheat sensitivity (NCWS), 40 individuals with celiac disease, and 40 healthy subjects for the study. NCWS patients were excluded if they showed any of the characteristic diagnostic markers of celiac disease (celiac-specific IgA, anti-TG2 autoantibody, or celiac-like histology).

The researchers took blood samples and intestinal biopsies from all 160 patients. The blood samples were used to look for particular signaling molecules and proteins in the blood, while the biopsies were used for histological analysis of the tissue microstructure. In addition to comparing these measures between conditions, they also took a subset of 20 NCWS patients who had adhered to a gluten-free diet for six months and compared their blood and biopsy samples before and after gluten avoidance.

Gluten-Sensitive Individuals Have Leaky Gut

So what did they find? Non-celiac wheat sensitive individuals have … drumroll … leaky gut! NCWS subjects showed increased intestinal permeability compared to healthy subjects.

This is not really all that surprising, since we know that gliadin, a component of gluten, can affect tight junction proteins (5).

In addition, subjects in the NCWS group had systemic immune activation. Serum levels of both lipopolysaccharide-binding protein (LBP) and sCD14 were significantly elevated in individuals with NCWS in comparison with individuals with celiac disease and healthy controls. These are sensitive markers of microbial translocation. In other words, they indicate that bacteria and other microbes from the gut interior are “leaking” into the bloodstream, inducing a low-grade, chronic inflammatory response from the immune system (6).

Histological analysis of biopsy tissues showed that the NCWS group also had epithelial cell damage similar to the celiac disease group, a result supported by elevated levels of serum marker FABP2 (7). Moreover, in the subset of NCWS individuals analyzed before and after adherence to a gluten-free diet, they found that inflammation and cell damage markers improved significantly after six months of gluten avoidance.

Gluten Sensitivity Exists—Here’s How to Know If You Might Have It

Evidently, there are certain individuals who possess non-celiac wheat sensitivity and would benefit greatly from avoiding wheat. It’s unfortunate that so many people who might benefit from a gluten-free diet never try it or don’t stick with it because of the lack of support from media, the medical community, and the general populace. I hope that this new research study (and others that will surely follow) will make it just a bit easier for people to make the right choice for their health.

So how can you know if you have NCWS? The biological markers used in this particular study may be used in the future to help diagnose NCWS, but at the moment, they are purely used for research purposes. Nevertheless, there are two ways to determine your gluten tolerance:

  • A Cyrex panel: Cyrex Array 3 is a panel that tests your potential for wheat and gluten protein reactivity and autoimmunity. It must be ordered by a healthcare practitioner.
  • A self-experiment: Eliminate gluten from your diet for 60 days and then perform a gluten challenge, taking careful note of any symptoms. I still hold that this is the best way to determine your tolerance for gluten.

Now I’d like to hear from you. Did this article change your perception of gluten sensitivity? Do you or someone you know have non-celiac wheat sensitivity? Have you ever tried a gluten challenge? Share your opinion in the comments!

391 Comments

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  1. Thank you ALL for your comments!
    Even though I have no gluten problems, my consciousness is expanded by what is said about the topic!

    • You mean you have no OVERT symptoms that you are aware of… we are still unsure how much or how long of exposure is required to manifest symptoms… the whole point is to AVOID the potential problem to begin with…

      • Actually, Fasano studies a while back and the latest one (Hollon 2015) have clearly shown that gliadin triggers leaky gut in EVERYONE (at least in vitro), with the “healthy” control group showing even more leakiness than celiacs in remission following a gfd for a while. The only difference was about the production of IL-10 in the control group hypotetised as antinflammatory patway giving more protection to the aforementioned group.
        Probably it’s also about gut biome that may have a potential protection in someone.
        But the point is that we don’t know how and when we may develop gluten related issues that take decades to develop, and in many cases it happens silently, from bad aging to cancer etc…
        But again, what is the main point here? Why we should be eating something that is a far cry from the species appropriate food?
        Aside from the great hazard given by prolamines, we have carb acellularity that may drive an aggressive microbiome, SIBO, etc., we have antinutrients, lectins, mycotoxins, omega 6, high glycemic load, esorphins, and a lack of nutrient density that make such stuff not suitable for a thriving diet.
        In light of that, why one should insist to eat that stuff in spite of a nutrient dense toxin free one made by meat, fish, tubers and veggies?
        Why we should go on with this hoax for the sake of business lords?
        Grains are unsustainable, they make us sick and they are destroying the planet. Folks wake up and face the real problem instead of discussing about fancy details that don’t target the real underlying issue.

        • Do you presume that all folks reading your post have a clinical/academic background in nutrition? Are you trying to impress us? I am sure some of us would like understandable language that would be of value to the subject.

            • Denis, the point is that grains, and especially wheat, are just a survival food that before or later damage our health. Symptoms and manifestations are not black and white, but the issue has many shades of gray, but be sure that it affects all of us, from small issues to death. In poor words, eat plenty of grass fed meat, wild caught fish, organic veggies and adjust your carbs intake with tubers and fruit (depending on your physical activity, metabolism, etc.), and leave your pizza for your occasional treat with your friends as part of 80-20 rule (I prefer 85-15), of course if you are not celiac or very sensitive, otherwise it may be better to forget about them.

  2. My partner is certainly Celiac.. Myself it is more into the realm of sensitivity. I get skin reactions ranging from Body Oder to, Acne and Dandruff. And! this is cool. If I have been clean from Gluten for a few weeks than on a lark have a piece of bread, I get a pretty similar feeling to when I am intoxicated. Brain Buzz! How much work is my body needing to do in order to metabolize Gluten?

    Interesting.

  3. After having been diagnosed with RA went grain free, dairy and suger free ( AIP elimmination diet ). My RA symptoms of fatigue, pain and swelling disappeared 80% within three months. The remaining 20% seems to stick. I wonder is there something still in my diet that I should consider?

  4. I am that person and have struggled since I was 14. A non-gluten diet has saved my life. Thank you for all the wonderful information

  5. I have been ff the gluten discussion for years. I have been on and off gluten for years also. No difference. After being off gluten for 1 year, I was recently in France and couldn’t help eating all that delicious French bread. I kept away from the sugary croissants. No problems. I came up with a question I can’t answer. What if it is the bad, adulterated, GMO, pesticided wheat that is in the United States in almost everything we eat. In a country such as France they don’t poison their wheat. I heard the same thing from some one who went to Italy and ate all the pasta. Could Monsanto and others really be poisoning us?

    • Yes Judy, Monsanto and other chemical companies, along with a great many conventional farmers are poisoning us, the land, and our water.
      Despite the fact that we do our best to buy organic produce, organic (or grassfed) dairy, pastured meat and eggs, (no grains for the last 3 years), I was always under the impression that if I sourced out non-GMO’s as part of my family’s diet, we would not be exposed to ingesting glyphosate (such as Round-Up) on a regular basis. Sadly, in the last two weeks, I have discovered this is not the case. Farmers have been spraying many different non-GMO crops with glyphosate just prior to harvest for years! This is done for the purpose of desiccation (drying out) of the crops so they will ripen more evenly, which in turn allows the farmer to harvest much earlier than if he/she just allowed nature to take its course. The glyphosate hastens the death of the already dying (ripening) plant, so that the greener plants (that are not quite ripe) will now die quicker, which evens out the ripening process of the entire crop. Apparently, this practice (poisoning our food) occurs for the sole purpose of more convenient time management for the farmer (and making more money). I wish I could tell you this is just happening with WHEAT, as it is a widespread practice in North America, especially in the wetter, colder climates of Northern United States and Canada for that particular grain, but according to the articles I have recently read, OATS, BARLEY, RYE, FLAX, LENTILS, PULSES (BEANS), PEAS, POTATOES, SWEET POTATOES, SUNFLOWER SEEDS, SUGAR CANE, QUINOA AND CATTLE/HOG FEED can also be desiccated with glyphosate just prior to harvest. One article even included AVOCADOS! Of course, these foods are over and above the GMO’s such as CORN, SOY, SUGAR BEETS and CANOLA that we know are drenched in glyphosate.
      Tropical Traditions recently posted an article that reported findings from independent testing indicating that the Organic Wheat Samples they sourced tested positive for glyphosate levels almost as high as those found in the Traditional Wheat Samples!
      As some of the other comments have stated – Glyphosate is an antibiotic, and as such, continuously kills beneficial bacteria in our guts, in our animals’ guts, in bees’ guts and in the soil. According to Stephanie Seneff, PHD, glyphosate compromises our cells’ abilities to function effectively on many other levels as well. It also kills all non-GMO plants, for goodness sake! Are we the only species on the planet that can’t figure out, by association, not to eat something that is clearly not healthy for us? I guess none of the other species have “SCIENCE & GOVERNMENT” to explain to them that it is safe to eat something that kills the food that could keep them alive.
      In my case, after much reading, I believe my system is hampered by mercury toxicity (from dental amalgams), which I now realize I have been struggling with for years. This heavy metal toxicity compromises my body cells’ ability to detoxify efficiently. My system is further compromised by Candida, which could have developed because of the high mercury levels. Then when I eat foods contaminated with glyphosates (and probably other pesticides), my body is not able to clear out these chemicals as quickly as a healthy body would. It then reacts with bouts of acne, inflamed and hurting skin, and joint pain in my knee and thumb. I am not ruling out gluten and gliadin as culprits, but I have had the same reaction from eating non-organic sweet potatoes and sunflower seeds.
      A note to those who are frustrated because they feel they are eating all the “healthy foods” and are still struggling with their health – I react almost immediately with joint pain when I eat nuts and skin problems when I eat sesame or chia seeds. Not sure why, although it is probably a result of leaky gut.
      Best of luck to everyone in their quest for health!

      • I agree with your views on the the use of glyphosate.
        But, please realize that poor crop nutrient is more to do with crops not being able to reach full maturity, and growing in nutrient deficient soil created by glyphosate’s depletion of the symbiotic algae/bacterial biota, [but not molds].
        Not so much the fast 1/2 life of ‘residues’ which is why it is considered ‘safe’

  6. I’ve been GF for 1.5yrs and CF for almost 4 yrs. I’m practically grain free and cannot tolerate night shades. My question is how come my gut is not healing? In fact, I almost feel like I’m getting more and more sensitive to foods. I supplement probiotics, omegas, etc. I know you can’t give personal medical advice, but I’m curious if others are finding this too.

  7. I know it is real because I have been dealing with it for the last 5 years in my awareness and trying to convince conventional doctors who are totally closed off to accepting NCWS or Leaky Gut, telling me these things do not exist. Thank you for delving into this and calling attention to a disorder that needs more attention.

  8. Very little explained about the design of the study. There is no placebo control. Association does not mean causation. It seems like paleo community points that out if a study is anti-paleo. If it is pro-paleo, they will ignore it.

    • Byron,

      I think to have a big picture view of anything, we have to stop relying so much on these clinical studies and really take note of what people in the real world are actually saying based on their cases. I mean just look at the wealth of information that can be gleaned from all of these stories here people are given. I think it can be a lot easier to understand what is going on by listening and observing. The proof is often in the pudding. I think it’s pretty clear that the ubiquitous U.S. wheat is causing disturbances in digestion for those who are consuming it. Taking it out and learning more about general healthful practices and diet is the most sensible way for one to understand it’s effects.

  9. I do not have celiac desease, but i removed gluten and I feel so much better: good digestion, not feeling bloated, i feel more active and I even got rid of my seborrheic dermatitis.

  10. I know for certain that my autistic son is not allergic to gluten. I also know that gluten-free diets help many autistic children. I am debating whether or not to take the plunge. I know he is not allergic, but I am guessing from this article going gluten-free still might help him.

    • He can be gluten sensitive and not gluten allergic . Your regular Doc blood test will not detect this.

    • My ASD son had marked improvement going completely dairy free. Casein leaves the body more quickly than gluten. I would start there first. If you see improvement, then go GF as well.

    • Take a look at the GAPS diet to help your autistic son. Gluten definitely needs to be eliminated along with dairy and most of all, SUGAR. Amazing results have been reported on autistic children after diet changes. It all stems in the gut!

    • Wheat germ agglutinin is a non-glutin toxin present in all wheat products (but in higher levels in whole wheat) that negatively affects the brain, especially in autism. This toxin affects everybody to some extent. Wheat is not a suitable food for humans.

  11. I have been gluten free for 3 years, but on a trip to visit relatives I ate lots of bread, for 2 weeks. Now I am suffering sore joints after weight lifting, and a general sense of fatigue. Also my skin got very dry and crinkly !! I’m back to grain free except a bit of quinoa every now and then.

  12. With sensitivity to modern wheat varieties, I stick to spelt bread;
    unfortunately this is expensive and not very readily available. Several of the gluten-free snacks I’ve tried have had far too much sweetening in them (even golden syrup) so I always carry a couple of oatcakes in my bag as emergency carbohydrate.

    • Go for the grain free including oats, they have less sugars. I just started and learning their is options out there. 😉

  13. The big question is, does a leaky gut causes NCWS or does gluten causes a leaky gut? I’m 100% sure I have a leaky gut and I’m sensitive to a ton of stuff but, oddly enough, not to gluten. I still don’t eat any though because I hope it will help me heal my gut.

    • My Functional Medicine Specialist said I have a leaky gut but she did not request a test for this. She said is what not necessary because it was obvious I have a leaky gut and with the none celian gluten sensitivity I had to go on the no grain and FODMAP diet anyway. I already lost 50 pounds before starting this diet and now I lost another 11 the last 30 days. I’m underweight now. ;-( Before this all my blood test were normal on everything.

      • Jose:

        The same thing happened to me when I adopted a gluten-free and dairy-free raw organic diet. I lost nearly forty pounds. If you are underweight, eat a handful of raw organic nuts after lunch and dinner. A cup of nuts is almost 1000 calories. After only one month, I gained back ten pounds — and then cut back somewhat on the nuts.

        • My Doc said not to eat more than a hand full which is around 10-14 nuts. I was eating this once daily. Let me go up to twice daily to see if it helps. I do love nuts so this won’t be a problem. Thanks Michael!

    • Coccinelle,

      Proteins in gluten can poke holes in your gut – causing it to leak – as can sugar, dairy, stress!, too many antibiotics or NSAIDS, toxins in food. If you suspect you have a leaky gut, you want to heal it by removing the foods that can cause inflammation (gluten, dairy, grains, legumes, SUGAR) and make sure you add in a good source of probiotics. Good bacteria in probiotics puts good bugs in your gut that help it get back in balance. A leaky gut can lead to a whole host of medical problems including autoimmunity. I would say that autoimmunity definitely has a component of the gut being leaky to occur but it isn’t the only reason it occurs. So if you have a leaky gut, you open the door for autoimmunity and other ailments to come walking in.

      For sure, if you have a leaky gut, I’d continue to stay away from gluten! Be well! – Francesca (Certified Holistic Health Coach)

        • Are you also taking any glutamine, gamma-oryzanol, N-acetyl D-glucosamine or DGL? Not a lot of studies, but these are the functional suggestions to help to rebuild healthy gut tissue as you avoid any foods you are sensitive to.

    • Gluten causes leaky gut, not the other way around. There is a signaling protein called zonulin that leads to malfunction of the tight junctions in response to the ingestion of gluten, even in healthy subjects. Healthy subjects can just tolerate this onslaught better and heal more quickly.

      • I agree that gluten can cause leaky gut in this very specific and unique manner but leaky gut can be caused by a myriad other factors (NSAIDs, stress, alcohol, other food sensitivities). Then regardless of how you got it, the immune system will be much more exposed to potentially immune provoking food proteins including gluten. Therefore leaky gut could predispose one to developing gluten sensitivity. It’s such a dance!

  14. I have gone through almost as best as I can, grain free eating for over two years and felt much better in terms of digestion and general well being. Ttogether with strength training twice a week, plus being sugar free, I was able to eliminate one out of 4 blood pressure pills I was taking (amlodipine), and reduced my bisoprolol by a quarter. With the addition of 2000mg vit C and 450mg magnesium at night, I’m feeling more energetic in the day and less fatigued especially around 5pm in the afternoon though sometimes I do need a short nap.. I hope to work on eliminating my diurectic but this is not possible for the moment. On elimination I immediately put on water weight and the water retention causes the blood pressure to go high.. Any suggestions what I should look at next?

    • Stephen:

      Try a candida cleanse. Six months after giving up gluten, dairy, refined foods, and sugar (except fruit) I performed a candida cleanse. The improvement in my health (after about three months on the protocol) was just as significant as giving up gluten and eating right.

      If you have EVER taken antibiotics you almost assuredly have a candida overgrowth issue. My board certified nutritionist recommended Lauricidin, which is derived from coconut oil. I also later added oregano oil. Good luck.

      https://www.lauricidin.com/

    • Stress management and more frequent and varied exercise might help. Bisoprolol can sap energy but not knowing your history I couldn’t say if it would be wise to lower it and increase another BP med instead. Another food sensitivity could contribute to fatigue and even drive up BP if it is causing inflammation. Many gluten sensitive folks are also dairy intolerant so that could be a good place to start but soy is another big one. You are already off other grains but corn is a big culprit.

      I would be careful about treating candida with any supplement that has antibacterial action which the monolaurin in Lauricidin does. It will indiscriminately kill your good gut microbes along with the bad. This could be a reasonable risk to take if you are sure you have candida in your gut but many people even if they’ve taken lots of antibiotics do not grow out candida in stool tests. So I say test before you treat!

      Hope you feel better

  15. Our adult son has ulcerative colitis, and has to manage his condition with dietary and supplementary measures because he is severely allergic to all the meds his gastroenterologist prescribed. This difficulty likely has been a blessing in the long-run, because he does not suffer from drug side-effects, yet seems to avoid major flare-ups, while those taking drug therapies still suffer major flare recurrences. His diet basically is an anti-inflammatory celiac regime. Occasionally he has been exposed inadvertently to gluten as an additive, and immediately reacts with either headaches. chest pains, fatigue, bloating, and colon discomfort which can be quite severe. But so far, has not experienced a full-blown colitis flare since going gluten free. However, he has noticed It takes very little exposure to gluten to bring on some negative symptoms.
    Strangely, his mainstream medical care givers do not acknowledge the possibility of non-celiac gluten sensitivity, and do not see the need for any testing to confirm. They just want to do colonoscopies every few months, which unfortunately set him back each time in recovery and gut healing. He has decided to forgo any further invasive scopes for that reason.
    Initially, he did have a c-diff infection, which was apparently eliminated with vancomycin. C-diff infection may mask itself with similar symptoms as that of gluten intolerance, so there are times he wonders if the pathogen may still be present in his system, but so far his gastroenterologist sees no cultured evidence. He has decided on his own initiative to avoid antibiotics which generally weaken all the gut flora and drastically reduce the effectiveness of his immune system, opting for a regime of saccromyces boulardi, probiotics, and using oxygenated charcoal to capture any possible c-diff inflammatory toxins. The c-diff organism has the ability to hide as an inactive spore, so he will likely not know for sure if it has been eliminated permanently from his gut.
    His experience leaves one wondering if there may be a similar autoimmune mechanism at work at the metabolic cellular level in ulcerative colitis and Chrone’s as that of Celiac’s. Could there actually be a related link which researchers are missing, thinking only genetic predisposition for Celiac’s, but not necessarily evident for UC or Chrone’s? If epigenetically cells can be turned-off, epigenetically they may again be turned-on, and this could occur both with or without any apparent generational familial genetic mutation passed down, but rather also be initiated through adverse nutritional factors and/or environmental or chemical exposures activating or deactivating processes at the cellular genetic level. Such could also explain why there seems to be an upsurge in Celiac, Ulcerative Colitis, and Chrone’s patients in the last few years beyond what would otherwise be predicted per population.

  16. I have a question. I have hypothyroidism and had a TSH of 95 and thyroid peroxidase antibodies were elevated. I went on NDT and after 7 weeks TSH came down to 7, but still antibodies were elevated. For the last six months I have completely cleaned up my diet. I have cut out all caffeine, all gluten, all grains, all dairy, all sugar (except for natural sugar in fruits), all soy, all processed foods and all alcohol. I have lost 35 pounds.
    I just had blood work done two weeks ago and now I am hyperthyroid. My TSH came down to 0.13 (according to Quest it should be 0.4-4.5) and again my antibodies are elevated to 112 (according to Quest it should be below 9 IU), but this time my Free T3 is also out of range at 6 (according to Quest it should be between 2.3-4.2pg/mL).
    I am at a loss. I’ve done everything I know to do to get my antibodies to come down. I make sure I get 7-8 hours of sleep per night and I keep my stress levels down as much as I can.
    My antibodies are high no matter what I do and they are high no matter if I am hypothyroid or hyperthyroid. I see a functional medicine doctor and she is going to lower my NDT dosage, but what else can I do to lower my antibodies? Any suggestions? This is driving me insane and is causing me a lot of anxiety.
    Oh….I have been on 200mg oral compounded natural progesterone daily for the last 7 months and estradiol and progesterone levels are within range.
    Would natural progesterone have anything to do with elevated Free T3 and elevated antibodies? I’m at a loss.

    • Sounds to me like you’re getting better, and you simply need to lower your medication as a result. That’s great! (If you get more medication than you need, it will make you hyper.) Also, I think it can take up to 18 months for your antibodies to get back down to normal. So maybe you are on the right track and just need to keep going, tweaking the NDT amount when necessary.

      • Hi Susan!
        Thank you so very much for responding to me. I cannot tell you how much better I feel after reading your comment. I will continue to keep doing what I am doing and I will stay positive and EXPECT that those antibodies will come down. I had no idea it could take up to 18 months. Reading that gave me a lot of relief. Thanks again! You made my day!

        • Hi Renee and Susan,
          I have gone through a similar situation as Renee for the past year. Started with hypothyroid and TPO at 1600+. My medication was adjusted after becoming hyperthyroid. Tested TPO after 4 months and it was 1700+!! Now, a year later, I need to increase my thyroid medicine again, and TPO still at 1600. Not sure what to do. Main symptom is poor sleep (and since going AIP much more sensitive to food). Very frustrating.

        • Also, my weight dropped from 136 to 106!! I’m 5’7, and too thin now and unable to put any weight back on (though I do feel mostly good). So much to figure out!

        • Renee,

          There’s a great book you should read called “Hashimoto’s Thyroiditis – Lifestyle Interventions for Finding and Treating the Root Cause” by Izabella Wentz, PharmD, FASCP. The author has this condition herself, and she researched everything that contributes to it and how you can cure yourself. She also talked about how when the antibodies are attacking the thyroid sometimes that causes the thyroid to release more hormone, making you temporarily hyperthyroid even if you are usually hypothyroid. I think this book could be helpful for you.

        • Renee,You may wish to try weaning off of the progesterone and take Vitex Chasteberry instead. Taking hormones even bioidentical just makes one’s body produce less, as I found out by experience. Vitex works well to regulate my progesterone levels. But you have to take it daily without fail from day 5-28 or they’ll drop. Blessings!

    • Do you have neck pain? Specifically lower neck? Innervation to the thyroid comes from this location. Is it possible that the communication from you brain to that organ has disruption? As a chiropractor this is how I think. Hope this helps.

    • How about looking into iodine/iodide supplementation as well as securing organ health first – instead of just allowing your doctor to fixate on hormonal adjustments.

      Unfortunately, most people think that Hypothyroid is possibly caused by insufficient Iodine and Hyperthyroid is related to excessive iodine.

      From all my reading (plenty) it would seem that hyperactivity of the thyroid gland is just as associated with insufficient iodine. The reason one person with low iodine intake will become hypo- and another will become hyper-thyroid is just their own individual constitution or various stressors.

      I’d find an iodine-aware doctor if I were you. Best of luck in your search for health. I have heard that glandular problems are difficult to deal with. However, it’s good to go even farther up the pipe, so to speak, and see if merely manipulating hormonal levels may not always be the only way to go. Perhaps looking at overall health is better.

      Also, maybe taking so many foods out of your diet has resulted in vitamin & mineral deficiencies. Just a thought.

      • Thank you Samia!
        I will definitely look into iodine supplementation. My doctor is a functional medicine doctor and has been pretty great with me as far as listening to me. She did do vitamin D testing and put me on 10,000 iu per day and now my vitamin D levels are perfect. She has me on a high quality non-gmo multivitamin and 1,000 vitamin C per day. I have also incorporated Turmeric, Holy basil, ashwaganda (for adrenal exhaustion) and biotin for my thyroid related hair loss.
        I am definitely going to ask her about iodine supplementation. Thank you so much for your comment!

        • I also have hypothyroidism caused by the autoimmune disease Hashimoto’s. Iodine is actually NOT good for those with Hashimoto’s. It can make your thyroid even worse. Unless you test your level of iodine in your blood and come up low.. I would not put more iodine in your diet.

          • I started on Lugol’s iodine but didn’t know about some protocol that includes taking selenium and other supplements if one supplements with iodine. Iodine caused my antibodies to increase 10-fold so I knocked it on the head.

            Unfortunately I also tested iodine-deficient prior to commencing the Lugol’s solution so now just try to ensure that I have iodised salt (which BTW doesn’t contain wierd stuff).

            • I’m not an expert on Iodine. However, I have heard that some people who do need iodine (testing shows they are low + they have symptoms) don’t do so well on Lugol’s, which is nowadays taken in pill form.

              There is another form of iodine supplement that is not Lugol’s. To each his own. We are not all built the same way.

              • I do fine on iodine trichloride and colloidal iodine, but lugols slows my metabolism. It’s important to take selenium as well, for selenium dependent thyroid hormones. I take methylselenocysteine, as other forms of selenium make me ill.

                • Hi, gh. I’ve never heard of iodine trichloride. I myself take the ammonium form and like it.

                  What do you think of the inexpensive yeast type of Selenium? Also, do you take Se every day?

                  I’m not hypo; just making sure I have enough Iodine in my body, since I don’t use iodized salt.

    • Renee:

      I recommend that you read “Hypothyroidism Type 2: The Epidemic” by Dr. Mark Starr. I just finished reading it (after previously reading a dozen other books on hypothyroidism over the years) and I was impressed by it.

      The end of the book also contains a paper written by Dr. Jerry Tennant, who writes some interesting things about Hashimoto’s thyroiditis and elevated antibodies. For example, people with Hashimoto’s should take levothyroxine instead of natural desiccated porcine thyroid preparation.

      • Thanks Michael! I will definitely check it out. I’m researching and reading so I can learn as much as I can. I want to be proactive with my health. I hate Hashimoto’s disease. 🙁

      • ” For example, people with Hashimoto’s should take levothyroxine instead of natural desiccated porcine thyroid preparation.”

        I have read that this assertion has never been proven. The only study done showed that NDT was beneficial and lowered the antibody levels. I’m taking NDT for my hashi’s but haven’t measured the antibody levels since I switched from levothyroxine. Must get them done….

        • FYI, there are several pharmaceutical companies that make Levothyroxine. Be sure your pharmacy uses a manufacturer that doesn’t use gluten as a filler. I actually had to switch to Levoxyl (gluten free).

  17. Hi,

    I was diagnosed by a functional medicine specialist with the non-celiac wheat sensitivity and celiac gene. She has me on a FODMAP diet with no grains. After 30 days no improvements of my systems which are not the typical symptoms. Chest pressure, rib-cage pain and hard time breathing and is all day long except when I sleep. I had a little gas but not really a stomach problem. I also came out positive with the SIBO bacteria which I took an antibiotic for 14 days before I started the no grain diet. (Not sure if I;m cleared from the bacteria so I took a 2nd SIBO test and waiting for results) Now on top of that, I came out with extremely high levels on all 14 Mold allergies. I have been cleared by my pulmo and cardio. Mild reflux/gastritis but nothing else. Sure, anxiety not making it easier. ;-( She told me it could take 4 years before I get better but even then I’m stock with a lifetime of grain free. ;-( I still have my doubts and waiting 4 years is absolutely ridicules.

      • Hi Mandy,

        No, have not done a candida test but I will give this simple test a try . Yes, that is exactly the way I see it and that is why I’m really concerned she is not helping me. I have been grain free for almost 6 weeks and on the FODMAP diet for 4 weeks with no improvement at all. ;-(

        • I trust you heard Chris’s recent cross promotion interview with 2 previous clients on a self gut health healing protocol. An informative program which I would do myself if I weren’t so far down the track.
          I could not find a link, can anyone help or please Chris, re link.
          Anyway, Chris down played candida.
          Sugar [carbs] drives candida & dysbiosis both good & bad yeasts & bacteria.

          • Andrew and Jose, I would be interested in this link, also. All I can say is that I finally pared my diet down to meat (not cured), moderate amounts of healthy natural fats, and easy to digest fruits and vegetables – cooked apples, banana, cooked spinach, some but not all cooked squashes, cooked carrots, cooked green beans, and cooked beets. I felt a similar inflammation under my ribs that you are describing – this is different from the stomach pain I described elsewhere. It turned out I had an egg sensitivity. Within three weeks of going off eggs, that particular symptom disappeared, thankfully. I’m not suggesting that it’s eggs for you, though. My heart goes out to you and many others who have commented here. A virus started my whole adventure with food sensitivities. Best to you, Jose, and I’ll keep checking in for that link mentioned earlier.

              • Well, maybe. I’m not sure food sensitivities is even an issue with you, based on your visit to the Mayo clinic. And I’m totally unqualified to give you advice. I interjected my experience with eggs just in case. I had both upper stomach pain and IBS in addition to inflammation under my ribs. You don’t seem to be experiencing any of that. You know, this is all interesting regarding your back because hunching over can bring on my stomach issues. How different parts of the body can affect other parts is so interesting. Best to you, my friend!

                • I do have gluten sensitivity with no direct symptom, so I’m open to try anything that may help me with my actual symptoms. 😉

                • 🙂 It’s funny that the last thing I said to my naturopath was that it couldn’t be the eggs. “I eat at least 2 a day”, I cackled. Ever since then, I’ve been more open minded, and I’ve read so much, too, that I consider all the possibilities. I’m throwing this in as a note of humor and as a observance of human nature.

              • One of (many) problems I encounter is the ENORMOUS difference between a PASTURED egg from a free-range hen NEVER fed grains, and the bullshit “vegetarian-fed”, “natural” eggs in the market… these are not even in the same BALLPARK !!! Get your eggs from someone you KNOW, if possible. Duck eggs are even better !

                • I eat organic eggs and will stop for 3-4 weeks just to give it a try. Never had Duck eggs, but will check out once I do the diet. 😉 Thanks!

  18. N.C.W.S. seems to be a fairly recent development. I see it as a symptom of other, deeper problems. Get to the bottom of it and maybe you can reintroduce wheat and gluten. I see that Dr. Douillard of lifespa has written a book on this (reintroduction of wheat products) and is having a seminar, so I’m going to sign up and see what he has to say.

    • In my case with the Celiac Gene that won’t be possible. Now, only 1 out of 35 with the celiac gene gets the celiac decease so is a chance I will be taking. I actually don’t mind that much being grain free, but 4 years to feel better is unrealistic. ;-( I can always take the chance considering that 1 out of 99 gets it anyway compared to 1 out 0f 35 with the gene. 😉

      • Jose,
        Have you looked into mold/mycotoxin illness, biotoxin illness if you are positive to all Molds? Mold is not easy to eliminate or cure, it is possible, takes diligence and time and all your surrounding environments must be clean. Best,
        Julie

        • My house is only 6 years and is mold free. My concern is the food because I eat lots of re-headed foods and fruits like bananas which most of the time have dark moldy spots. ;-(

          • Jose, normally, black spots on bananas are “sugar spots”, due to the conversion of starch present to sugars… (what most people refer to as a banana “ripening”… perfect example would be plantains which, when “unripe” (green) are mostly starchy carbohydrates, but when black are mostly sugars…

            • Got it, thanks! But how do you know when is to moldy to eat with high mold allergies. The smell? I normally buy organic and green but they do taste much better when they are ripped. 😉

              • Jose, as MR PALEO”, I don’t eat my fruit fully ripened… only barely ripe at best… really depends on the fruit. I cannot, in good conscience, recommend that anyone eat “moldy” anything, unless we are referring to cheese, and MANY people have an intolerance or reaction to many cheeses because of this… most people are unaware that in order to “make” most cheeses, as well as “buttermilk”, etc., the introduction of a particular mold into the milk/curds etc. is required… many people who complain about being “dairy intolerant” are actually reacting to the bacteria… not just lactose. https://www.youtube.com/watch?v=FHmXAb3G0ek

                • Thanks, I have been dairy free for some months now. No cheese of any kind even when Pizza was my favorite food. ;-( Now, I don’t have a problem with dairy as well. I can drink a gallon of regular milk or eat a pizza and not feel a thing so basically I’m following my functional medicine spe recommendations even if I have no regular symptoms related to this.

              • Unripe bananas are lower GI & provide Inulin as an indigestible [Carb] fibre for prebiotics, like cooled, cooked potatoes. They are all high carb. Check your Blood Glucose after eating.

      • Hi Jose. It took me exactly 4 years on a gluten, grain, dairy and sugar free diet to get better! I got worse the first 3 years but then gradually better. Now almost at original weight, enjoying gluten free grains and bread and even sugar on occasion without any symptoms. Hang on! Life gets so much better!

        • I plan to stay grain free all my live but my symptoms are not normal for this. I have chest pressure (under bone breast) all day long except when I lay back or sleep. Rib-cage pain, light headed and breathing problems. I do not have any stomach issues, excess gas or burp or anything that will say the food is triggering my issues. I can eat a grain free cracker or a whole pizza and is the same for my stomach and symptoms. So yes, I see myself on grain free diet because I do have the celiac gene and I’m gluten sensitive, but not sure any of this will actually help me with my symptoms. ;-(

          • Jose, have you been checked for cardiomegaly, pleurisy, sarcoidosis, and hiatal hernia ? And, have you seen a competent chiropractor ?

            • Actually I was referred to a chiropractor which deals with the nerve vagu. Yes, he ordered more x-rays and found many problems with my neck and back including a moderate scoliosis so I been getting treatment for this for 2 weeks now. Back is better but nothing better as for my regular every day symptoms. ;-( Tomorrow I’ll be going to Mayo Clinic, after putting a little pressure it was finally approved. My GI said that was my best option and my functional Medicine said is a waste of time. So far I have seen every specialist in the book including functional medicine and naturopathic doctors and so far nothing. They all tell me what I don’t have, but they can’t tell me what I have related to these symptoms. I had so far 3 endoscopes and 1 PH Bravo and nothing besides mild, very mild reflux. I had done like 20 test so far and they all show the same. ;-(

              • Do you have amalgams ? By the way, for what it is worth, I am not a big proponent of endoscopies, and even less enthusiastic about colonoscopies… suggest you write down conditions I mentioned, and take it with you to ask your physician about.

                • That is just to mention one, but I had done like 20 different tests including cardio and COPD. Actually, they all agreed that I’m a very healthy man. jejejeje Sorry, but my daily symptoms do not agree with that. -( No amalgams or hiatal hernia but not sure about the rest so I will ask them. Now, the problem with functional medicine and all these so called Experts is that they all blame nutrition, leaky gut and regular Doctors for every symptoms we have. In my book they are not any better or worse 😉

                • Jose, as a “functional nutritionist”, I am considered a “naturopathic” practitioner, so hopefully you won’t mind if I overlook your comment… personally, I’ll take a Naturopath over an Allopath for EVERYTHING, except trauma care…

                • Hi,

                  I speak for myself and my own experience. Just got out of Mayo Clinic and this is the opinion of this GI I saw. What I have on my chest and rib-cage is not reflux or stomach related. Keep in mind he based his opinion on all the test results I put on his hands including all the labs from a Functional Medicine and 2 CD’s. He also said he saw no reason for me to continue this grain free diet but he did recommend to stay with the FODMAP diet. Now, he did say my back has numerous conditions from mild to moderate and he believe that is the reason for my pain and symptoms. He did explain why but it will take for ever to write it here. 😉 He referred me to a Spine specialist. Now, I plan to continue the no grain diet but not the FODMAP because I actually don’t have any stomach issues. Btw, this is the same opinion my 2nd GI has but I needed a 3rd opinion.

                • Jose, I’m so glad you let us know. I was feeling uncomfortable with some of what I said as we tend to put our own spin on other people’s physical problems. I almost left another comment for you on that note but decided to let it go. I hope that you begin feeling better, soon.

                • No harm done, any comment good or bad is welcome and I do understand we all have our own issue and conditions but we are all just tying to help. 😉

            • Hi Paleo, after 14 therapies with a qualified Chiro no improvement. ;-( As for the other 3 you mention based on symptoms I do not have them. Now, I did come out with numerous back conditions up to moderate including a moderate scholiosis which I will see a neurosergeaon for evaluation. This could explain why symptoms are activated when I stand or walk. I no longer eat grain free but remain gluten free.

              • Jose, unless your “scoliosis” is genetic in nature, proper exercise to strengthen the abdominals in particular, and an inversion table, as well as proper sleep habits, would go a long way to alleviating your problem…

                • By the way, just from my “experience”, I personally would never have “back surgery”, no matter what anyone “said”… seen too many failures.

                • Thanks Mr Paleo!

                  Just today I saw a neurosurgeon and he did offer me to implant on my back but my back pains are not that bad and not all the time. Yes, sometimes they get ugly but is not all the time so for now I refused this option. My chest pressure and lack of air when I stand or even talk is the main reason I was looking for help and they thought maybe my back/cervical spine was the reason for it but the Doc said he saw no reason for it but the pain could create the lack of air and that is why he offer me this option.

                  So how can I help my scoliosis (is turning to the left)? To sleep facing my right? Any suggestions? I will get physical therapy starting next week.

                  This was basically my last option, so now I’m left with no options from my Doctors. I myself believe it may have to this with my vocals, like vocal disfunction because I feel the pressure and lack of air when I walk, eat or even talk. Gone 90% when I lay back to sleep but just knowing I will get worse when I wake up makes me lose sleep. ;-(

                  Jose

      • Yes, I understand that gluten/wheat will never be an option for you. I was referring to the non-celiac gluten/wheat sensitivity.

          • That is what some people think. Apparently they spray Roundup on the wheat just before they harvest it and so there are residues. Ghastly!

    • Thank you for that. Having been off gluten for over two years, I have also wondered whether my gut has healed enough to have an occasional grain treat. I just located Dr. Douillard’s book, which is slated for release in January:

      https://www.amazon.com/Eat-Wheat-Scientific-Clinically-Proven-Approach/dp/1683500113/ref=sr_1_3?s=books&ie=UTF8&qid=1472064255&sr=1-3&keywords=Dr.+Douillard

      I just began visiting an osteopathic physician. At my first session, she informed me that my skull bones did not move enough and that this can impede the lymph system in the head (which was only recently discovered). Then I just read this tidbit on Dr. Douillard’s web page. Wow!

      “Researchers have found minute lymphatic vessels in the brain and central nervous system (CNS) that drain directly into the body’s main lymphatic system. The discovery is groundbreaking; as previously, science did not know these lymphatic vessels even existed. The science shows that numerous toxins—including beta-amyloid plaques, which are linked to Alzheimer’s disease—are drained from the brain through the brain’s lymphatic channels while we sleep.

      This research is so compelling because it suggests that commonly, in the case of “grain brain” and other food intolerance health issues, these brain and CNS lymphatics as well as other lymph channels may be congested, and thus cannot flow or drain toxins out of our systems properly.

      Let’s follow this to its logical conclusion: Lymphatic congestion can lead to a heightened immune response resulting in inflammation in the body. Inflammation is directly linked to a host of digestive issues, food sensitivities and other health concerns. Therefore, it’s not the “grain,” but the “drains” that may be the real culprit behind this food sensitivity epidemic.

      A healthy lymphatic system starts with good upper digestion and a healthy intestinal tract. It is the primary circulatory system that processes both nutrients and toxins from the intestines. When the ability to digest certain proteins breaks down—which is all too common today in our stressful world laden with toxins—proteins like gluten and casein from dairy, ultimately clog the lymphatic system surrounding the intestinal tract. Over time, the lymphatic system, which drains waste from every cell in the body, can become congested, leading to food intolerances that we have blamed on foods like wheat, dairy, and others.”

      Certainly something to think about.

      • Dr. Douillard’s book is now available for only 99 cents (in Kindle format) for the next twenty days! I have only read the first chapter, but the book is extremely interesting and heavily footnoted.

        The idea behind the book is that you can heal your body to repair your digestive system, so that you can eat wheat products in moderation — especially more natural wheat products and especially when wheat is in season (as your body has evolved to produce more microbes that help digest wheat during that period).

        I cannot say more than that, because I have only read the first chapter.

        https://www.amazon.com/gp/product/B01I9NFIDI/ref=oh_aui_d_detailpage_o00_?ie=UTF8&psc=1

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