Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Symptoms Returning After Initial Cure


dws

Recommended Posts

dws Contributor

When I first went on a gluten-free diet, my symptoms disappeared almost immediately. Because of bad advice from the diagnosing physician, I did cheat on the diet. Still, I felt great for almost 2 years and then symptoms started coming back. I got wiser and tightened up my diet, but am still having problems with diarrhea and bloating. Does gluten sensitivity become more severe with time? I have read about some of the drastic measures some people have to take. My family is not gluten free, so I guess cc might be an issue. I just can't figure out why the miracle cure went away. I am also off of dairy.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Heidi S. Rookie

When I first went on a gluten-free diet, my symptoms disappeared almost immediately. Because of bad advice from the diagnosing physician, I did cheat on the diet. Still, I felt great for almost 2 years and then symptoms started coming back. I got wiser and tightened up my diet, but am still having problems with diarrhea and bloating. Does gluten sensitivity become more severe with time? I have read about some of the drastic measures some people have to take. My family is not gluten free, so I guess cc might be an issue. I just can't figure out why the miracle cure went away. I am also off of dairy.

From my experience you become MORE INTOLERANT the longer you are away from gluten. When I am contaminated I get diarrhea and bloating, when I am glutened I am TERRIBLE like food poisoning. I was able to eat gluten for 25 years now I can even stand a few crumbs... My doctor told me it was because I am now healed or healthier so the exposer is more dramatic and damaging a healthy system. The only other things is another food allergy, we build up intolerance with damage, you may be eating something your body can't handle as well. But I would tighten up your diet, check labeling, did ingredients change on some packaging? and be more diligent of CC. Then try some allergy testing if all else fails. Eggs were causing me horrible bloating that I didn't know I had developed an allergy to them!

cassP Contributor

also look at corn and soy... they can be problematic or contaminated..

its true- your reactions do get stronger.. and vary.. i actually got a little itchy the other day eating Diamond Pecan Nut thins.. its measured as <20ppm..

annoying I KNOW.. years ago when i went on Atkins- with occasional wheat cheats- i felt FANTASTIC... but also- we cant always equate our reactions to what exactly is happening inside our bodies. last year- i was still eating gluten.. very light... felt fine for the most part.. occasional cramping.. but i saw things when i went to the bathroom that i just simply cannot describe on here.. :o sorry tmi

T.H. Community Regular

but i saw things when i went to the bathroom that i just simply cannot describe on here.. :o sorry tmi

:D :D

Heh - I think the gluten community could easily make a horror movie with what we've seen.

Terror in the Bathroom - it's beyond description. :P

ravenwoodglass Mentor

You say your family is not gluten free. Have you gotten your own dedicated toaster, cutting boards and do you use great care to make sure you are not sharing stuff like nut butters, condiments etc that can have been double dipped by someone eating gluten? Your reactions are getting more severe because because when you are getting glutened the antibodies are flaring and your body is reacting to the reactivation of those antibodies.

GFinDC Veteran

... I just can't figure out why the miracle cure went away. I am also off of dairy.

There is no cure for celiac disease. When ya got it, ya got it.

Lots of us seem to get more sensitive after going gluten-free, reacting to tiny amounts of cc. When you get rid of all gluten and gluten cross-contamination, you will most likely feel better. There are also other food intolerances that crop up for some of us though, like soy, nightshades, dairy etc... So you may be reacting to some other food also.

dws Contributor

From my experience you become MORE INTOLERANT the longer you are away from gluten. When I am contaminated I get diarrhea and bloating, when I am glutened I am TERRIBLE like food poisoning. I was able to eat gluten for 25 years now I can even stand a few crumbs... My doctor told me it was because I am now healed or healthier so the exposer is more dramatic and damaging a healthy system. The only other things is another food allergy, we build up intolerance with damage, you may be eating something your body can't handle as well. But I would tighten up your diet, check labeling, did ingredients change on some packaging? and be more diligent of CC. Then try some allergy testing if all else fails. Eggs were causing me horrible bloating that I didn't know I had developed an allergy to them!

Funny you would mention eggs! I have had to stop eating eggs as an entree. I seem to do ok if egg is a minor ingredient in a baked good and I take it easy. It seems to be egg whites in particular that bother me. Thanks for the input.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dws Contributor

You say your family is not gluten free. Have you gotten your own dedicated toaster, cutting boards and do you use great care to make sure you are not sharing stuff like nut butters, condiments etc that can have been double dipped by someone eating gluten? Your reactions are getting more severe because because when you are getting glutened the antibodies are flaring and your body is reacting to the reactivation of those antibodies.

Yeah, I have been working on eliminating cc, especially since reading a lot of you guy's posts before joining the forum. I don't know if it was a coincidence, but I went camping for a couple of days recently and felt a lot better. Got away from my kitchen (we're slobs-crumbs, noodles and wheat flour sometimes all over the place) and ate out of paper plates and only brought gluten free food. I thought that going gluten-free was really difficult when first diagnosed, but fine tuning this thing is really going to take some diligence and some cooperation from my family. As far as being allergic to other things, its hard to say. I remember that before my initial diagnosis, I thought I was sensitive to a lot of things like tomatoes and greasy food. After I went gluten free, I had this iron gut and could eat anything as long as I basically stayed away from gluten. Now that I am having trouble again, I too am suspecting other sensitivities. But once again, maybe if I fully eliminate cc, other food problems will start to disappear again. I think an irritated system has a lot of trouble digesting things it wouldn't have trouble with normally. As humans, we eat such a variety of foods including things like tomatoes and nutmeg that because of their chemistry can be somewhat toxic. They just don't normally cross that threshold of causing major problems unless something else is bothering your system.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,871
    • Most Online (within 30 mins)
      7,748

    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SamAlvi
      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
      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
      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
      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
      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! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.