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Husband's Circumstantial Evidence


Ellie342

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Ellie342 Newbie

I know my husband is thinking I'm a bit of a nut for suggesting he try a gluten-free diet. He wouldn't meet any diagnostic criteria for celiac based on his tests, but I feel like the sum total of the circumstantial evidence is accumulating:

- he has mild chronic IBS

- he has recurrent aphthous ulcers in his mouth

- he has mild psoriasis, and an uncle with severe psoriatic arthritis (I've read a study that says those psoriatic arthritis patients with positive anti-gliadin antibodies see improvement of their arthritis on gluten-free diets, even though they don't confirm positive for celiac on bipopsy or anti-ttg)

- he tests "equivocal" for anti-gliadin IgA (top of the "equivocal", or "iffy", range) but has negative anti-gliadin IgG

No one thing is that big a deal, but the sum total sure makes me suspicious. What do you all think?

Ellie


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Ursa Major Collaborator

I think it can't hurt to try the gluten-free diet, what have you got to lose? It really might help, if your husband is willing to give it a good try, without cheating. And you're right, the combination of symptoms could be celiac disease or gluten intolerance.

If the gluten-free diet doesn't help, at least you'd be able to look elsewhere. By the way, those symptoms could also be caused by an intolerance to dairy or soy. Or a combination.

I hope that the gluten-free diet helps.

nikki-uk Enthusiast
I know my husband is thinking I'm a bit of a nut for suggesting he try a gluten-free diet. He wouldn't meet any diagnostic criteria for celiac based on his tests, but I feel like the sum total of the circumstantial evidence is accumulating:

- he has mild chronic IBS

- he has recurrent aphthous ulcers in his mouth

- he has mild psoriasis, and an uncle with severe psoriatic arthritis (I've read a study that says those psoriatic arthritis patients with positive anti-gliadin antibodies see improvement of their arthritis on gluten-free diets, even though they don't confirm positive for celiac on bipopsy or anti-ttg)

- he tests "equivocal" for anti-gliadin IgA (top of the "equivocal", or "iffy", range) but has negative anti-gliadin IgG

No one thing is that big a deal, but the sum total sure makes me suspicious. What do you all think?

Ellie

My hubby is a diagnosed coeliac but going gluten-free completely cleared his psoriasis (and eased his psoriatic arthritis) so it certainately can't hurt!! :)

happygirl Collaborator

I think that it would be worth it to have the full Celiac panel run, which includes the tTG test, which is more sensitive. After that, regardless of the results, it might be very well worth it to try the gluten free diet! There are many on this board who do not have an official diagnosis, but refer to themselves as "gluten intolerant"---they know they do better on the gluten free diet.

I think every single board member on here has been diagnosed with "IBS"....amazingly, the vast majority do not have these problems once on a strict gluten free diet.

Nancym Enthusiast

We get so many people with a positive dietary response that don't pass any clinical blood tests. If you could just get him to agree to a limited trial... it might convince him. But I would imagine it'll be hard to really get him to go along with the notion.

CMCM Rising Star

I don't know why so many people balk at testing out a gluten free diet......it's not like you're taking a dangerous drug or anything. Just a couple of weeks, a month, and you'll learn a lot. There are a LOT of nutritionists and doctors out there who feel gluten AND dairy are highly problematic and behind a huge number of things that ail us. They feel NONE of us should eat gluten and possibly dairy too. It's worth a try,and who knows, the psoriasis just might go away! Then the issue might become the question of whether or not eating gluten is a good trade off for having psoriasis and other things. And also the question of either celiac disease or gluten sensitivity remains. The latest book I just read claims that 80% of us are at the very least gluten sensitive, and that celiac disease is merely one extreme subset of the extensive group of people who are gluten sensitive. And there remains the question of intestinal damage occuring even if you don't have the celiac disease gene. Everything is not yet known about all this.

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    • marion wheaton
      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
      @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
      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
      @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!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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