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Thought I Was Gluten Free

kagm

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kagm Newbie
kagm
Posted

So, I thought I had been really good about being gluten free, but I kept feeling sick. I got the results from another test back and the doctor said, "there is no way you are gluten free. You have to be religious." My doctor totally thinks I have celiac because all of my blood tests are positive, but my gastro was like, "well, it's hard to say because your biopsy was normal." My doctor was like, "who cares? This blood test is definitive. So be gluten free."

Thoughts?

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kareng Grand Master
kareng
Posted

Do you have a copy of these positive blood tests? Maybe you should post which tests and what the numbers were. How long have you been gluten-free? The antibodies can take quite awhile to go down.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you are still feeling sick you may have gluten sneaking in somewhere. It is best to go with whole unprocessed food as that will cut out a lot of the CC risk. Have you taken the precautions in your home that you need to take, not sharing condiments, nut butters etc with gluten eaters, not baking with wheat flour for others, your own toaster, new strainers, new cutting boards etc.

kagm Newbie
kagm
Posted
  • Author

If you are still feeling sick you may have gluten sneaking in somewhere. It is best to go with whole unprocessed food as that will cut out a lot of the CC risk. Have you taken the precautions in your home that you need to take, not sharing condiments, nut butters etc with gluten eaters, not baking with wheat flour for others, your own toaster, new strainers, new cutting boards etc.

I have been gluten free for like 8 months now, so there shouldn't be more gluten in my diet, but I have NOT taken any precautions. I think I just didn't take it seriously enough. It seems overwhelming to me because I have a 4 and a 6 year old. I am constantly cooking for other people.

eatmeat4good Enthusiast
eatmeat4good
Posted

Oh my...at least do not cook with wheat flour. It can become airborne and hang in the air where you breathe it and then swallow it. And there are a million ways to get contaminated in a shared kitchen. Shared pots and pans, collanders, toasters, food surfaces, towels, dishes, spoons cutting boards. Your food needs to be kept totally separate.

biancanera Newbie
biancanera
Posted

Yeah, even in small amounts I get sick. I have to cook and eat everything separate too. One thing I do, I cook for my mother and myself, is that I cook gluten free stuff for the both of us. She doesn't really care either way. But if she did, I'd have to be really careful and sanitize everything and keep it separate. Also yeah I mostly go with fresh produced and rarely have processed foods outside of cereal. It's easier to be super safe than to keep eating bits of gluten everywhere hidden.

dilettantesteph Collaborator
dilettantesteph
Posted

It depends on how sensitive you are. I know people who cook gluten for others without issues. My son and I stayed sick until we made our household gluten free. Even when I didn't touch any gluten dishes, I still had problems. I would definitely not use flour and mentioned above.

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Metoo Enthusiast
Metoo
Posted

I have a 5 and 4 year old...I cook gluten free for them. Buy gluten-free mac n cheese, gluten-free brownies, Rice, gluten-free Chex. There are a lot of ways around gluten, even for kids! Smoothies! If you have it chances are your kids might have it too anyways, its certaintly not going to hurt them to be gluten free.

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  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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