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Tell Me Why Again Please.

thumper

By thumper
in Coping with Celiac Disease

Recommended Posts

thumper Apprentice
thumper
Posted

Ok I have reached a point where I have been gluten-free for 2 months and doing fairly good but I have lost sight of why I am doing all of this again. Following a gluten-free diet so could everyone chime in as to why I am doing this again ???

Thumper

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cruelshoes Enthusiast
cruelshoes
Posted

I'm not sure I understand the question. :unsure: In reading some of your other posts, it seems that you went on a gluten and dairy free diet to control the "D" that was worsening your heart condition. You also mentioned that you may have DH. Presumably, by avoiding gluten and dairy, you are trying to avoid the symptoms that they create. Are you saying the gluten-free/DF diet has not helped you experience relief from your symptoms?

I avoid gluten because it makes me sick. So sick I cannot function.

RiceGuy Collaborator
RiceGuy
Posted

Well, to start with, the immune system creates antibodies in an attempt to destroy the invader (gluten), but unfortunately for us it destroys the lining of the small intestine instead. There are the enumerable complications which result from this, besides things like pain, digestive issues, nutrient deficiencies, and a general inability to function as a human being. Those are what you might call the tip of the iceberg. The deficiencies cause various organs and systems of the body to fail, or otherwise not perform as they should. That then often leads to even more systemic diseases and disorders, such as cancer, thyroid disease, liver disease, fibromyalgia, cerebral palsy, neurological disorders, and all sorts of other chronic health problems. Celiac disease can and does eventually kill if not properly addressed.

So, unless you actually enjoy feeling like crap, you'll probably do well to adhere to the gluten-free lifestyle.

Some people do have quite a time at first due to withdrawal, but once you get through that, you'll likely do well enough not to care that you can't have certain things. I can honestly say I sometimes look back and wonder what all the fuss was about. As far as I'm concerned, the gluten-free diet is liberating, not limiting. I have sooo much more variety in my diet now, than I ever had before going gluten-free. In fact, I had never even tried most of the things I enjoy now. I was missing out, like most Americans are. And with gluten-free baking, I am actually enjoying things I couldn't have before, simply because they made me sick when prepared in traditional ways. Gluten-free bread is still bread, and it's still delicious. It's just not wheat bread. There's nothing wrong with that anymore than the difference between vanilla ice cream and chocolate ice cream. Both can be quite good, even though noticeably different. Some prefer one over the other, and it doesn't matter which.

Besides gluten-free breads, we also have gluten-free pasta, cakes, cookies, muffins, crackers, etc. I don't see a big gaping void in my diet just because they aren't made with wheat. I enjoy feeling well for the first time in my life far more than the smell or taste of wheat bread. I would usually drown it in peanut butter or margarine anyway :)

So, your question was?

ravenwoodglass Mentor
ravenwoodglass
Posted

To live. And be able to enjoy living while you do.

You must be having a hard time right now. (((((((((hugs))))))))

If something in particular is giving you a problem please don't hesitate to post about it. It can be tough at first but it really is worth it in the end.

I hope things improve soon.

imhungry Rookie
imhungry
Posted

"I have sooo much more variety in my diet now, than I ever had before going gluten-free. In fact, I had never even tried most of the things I enjoy now"

I and my family have enjoyed the new foods. In addition, we were able to figure out that our daughter is also dairy intolerant like me as I became more sensitive to dietary issues. She is stonach-ache free and that is wonderful for her!

I could not function and was really nearing being completely disabled due to how I felt. I could not do it anymore. I knew something was wrong, but not what for a long time.

So I do it to not feel that way and so I can support my family - daddy is a stay at home dad, bless his heart!

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    • 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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