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Additional Autoimmune Disease

holdthegluten

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holdthegluten Rising Star
holdthegluten
Posted

what percentage of celiacs develop additional autoimmune disorders?

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Ann1231 Enthusiast
Ann1231
Posted
what percentage of celiacs develop additional autoimmune disorders?

I don't know what the percentages are but after reading on this board, I'd say it's fairly high! I have developed rheumatoid arthritis plus my hypothyroid, hypoglycemia and fibromyalgia.

Generic Apprentice
Generic
Posted

I don't know if they have a hard percentage number, but it is very common. Scientist for years have thought all the auto-immune diseases are linked to celiac plus many other things. They have even linked schizophrenia with celiac. A interesting book to read that talks about this is called Dangerous Grains, can't remember the author right now. My mom is borrowing my copy.

I personally have asthma, hypoglycemia plus fibromyalgia.

2kids4me Contributor
2kids4me
Posted

I dont know ther percentage , but if you read my signature...my kids and I are a statistic, see this article: Open Original Shared Link

it may be helpful.

Anyone with one autoimmune disease is more susceptible to developing another autoimmune problem.

pixiegirl Enthusiast
pixiegirl
Posted

I'm not sure I'd buy the statistic if I saw one! There are so many undiagnosed Celiac's that I'm not sure a % of current celiac's would be representative and probably won't be until doctors are more open to making a celiac diagnosis.

I will say that from reading this list and talking to other celiac's it sure seems like a lot of us have other issues going on. I have allergies and eosinophilic gastroenteritis.

But I wish there was a lot more study on autoimmune system disorders.

Susan

wowzer Community Regular
wowzer
Posted

I have asthma and thyroid. My arthritis symptoms pretty much went into remission when I went gluten free.

darlindeb25 Collaborator
darlindeb25
Posted

Sometimes, I wonder if the problem is that so many celiac's go undiagnosed for so long, then other autoimmune diseases work their way into the process. Many times, other diseases are diagnosed before celiac disease has been found. Some say, if the celiac disease is diagnosed soon enough, then possibly the other autoimmune diseases just will not happen. Personally, I do not think they know enough yet about celiac disease to know what is what yet!

I have Raynauds and Peripheral Neuropathy, along with Celiac Disease. As of yet, the doctors haven't figured anything else out, so who knows.

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elye Community Regular
elye
Posted

One in eight type one diabetics are also celiac. Again, I strongly suspect that the number is higher, but many diabetics have celiac without knowing it.

CMCM Rising Star
CMCM
Posted

There is an association of celiac disease with various other autoimmune diseases. However, not all people with autoimmune diseases have celiac disease, but a great many with celiac disease (especially, untreated celiac disease) go on to develop other autoimmune diseases, perhaps because of the continual assault of gluten on the immune system, thus weakening it. I've read many places that one excellent reason to take even the POSSIBILITY of celiac disease seriously is to eliminate gluten and thus be in a better position to prevent another autoimmune disease from developing in the first place. Once something else crops up, such as arthritis, eliminating gluten may reduce symptoms but you are less likely to get rid of it entirely. Prevention is a much better option.

Also, there are many people with autoimmune diseases whose symptoms are greatly reduced by eliminating gluten and dairy, even though they aren't celiac and don't have the genes.

The more I read, the more evidence points to the general and widespread evils of gluten on our systems. I really believe that everyone, celiac or not, should never eat gluten. However, I doubt if it will be in any of our lifetimes that the medical community accepts this conclusion. And even if they did, I'll bet most people wouldn't give up gluten.

Respira Apprentice
Respira
Posted

Rheumatoid Arthritis and Crohn's disease here...

taweavmo3 Enthusiast
taweavmo3
Posted

Yep....my 8 year old was diagnosed with psoriasis two years ago, but the rashes started when he was three. He tested negative for Celiac, but he's gluten/casein free anyway. The diet hasn't really helped his psoriasis. I guess like with any other auto immune disorder, once the trigger has been pulled, the damage is done. But I'm hoping the diet will at least slow his psoriasis down, or hopefully prevent some of the major complications that can arise from it.

It's a running joke that just like our family, even our immune systems are dysfunctional, lol. On my mom's side of the family, we have colitis, chrons and rheumatoid arthritis.

taweavmo3 Enthusiast
taweavmo3
Posted

sorry, double post.

Electra Enthusiast
Electra
Posted
what percentage of celiacs develop additional autoimmune disorders?

I have Pernicious Anemia

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  • Posts

    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
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