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

Diagnosed After Gluten Challenge?

salexander421

Recommended Posts

salexander421 Enthusiast
salexander421
Posted

Just wondering who here was diagnosed after being gluten free and then undergoing a gluten challenge?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I was. After years of negative tests and progressive symptoms I had basically given up. My PT insisted I see an allergist who would deal with intolerances as well as allergies. He wasn't easy to find but I found him. He had me do an elimination diet and I reacted severely to adding gluten back in. When I called and told him he referred me immediately back to my GI doctor. I asked if I should continue eating gluten and his response was 'Oh heavens no!'. Well when I got to the GI doctor he demanded another challenge. The results of that were disasterous and included having a severe GI bleed. The results of the challenge were so severe he didn't even see a need to do the endo. I finally got my official diagnosis and profuse apologies from him at every visit after.

salexander421 Enthusiast
salexander421
Posted
  • Author

I was. After years of negative tests and progressive symptoms I had basically given up. My PT insisted I see an allergist who would deal with intolerances as well as allergies. He wasn't easy to find but I found him. He had me do an elimination diet and I reacted severely to adding gluten back in. When I called and told him he referred me immediately back to my GI doctor. I asked if I should continue eating gluten and his response was 'Oh heavens no!'. Well when I got to the GI doctor he demanded another challenge. The results of that were disasterous and included having a severe GI bleed. The results of the challenge were so severe he didn't even see a need to do the endo. I finally got my official diagnosis and profuse apologies from him at every visit after.

Did he do any blood testing or just diagnose you due to dietary reaction?

ravenwoodglass Mentor
ravenwoodglass
Posted

Did he do any blood testing or just diagnose you due to dietary reaction?

I was blood tested over and over and over since I had classic celiac symptoms and unfortunately I am a sero-negative celiac. As my present GI said I am one of those celiacs who would have been diagnosed by autopsy if not for that elderly allergist. I do also have DH but no derm was smart enough to biopsy for it and my DH was called everything from 'pickers acne' to 'atopic dermatitis' the skin equivalent of IBS, and even 'poison ivy in my bloodsteam' when I was a child.

Interestingly both my children had positive blood work and one had the endo which was positive also.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you are asking because you have gone gluten free and are now doubting whether gluten is an issue or not then you could always challenge for at least 2 or 3 months and then get tested. There have been some folks that have done that and gotten a doctor derived diagnosis but usually they were very ill during the challenge and there are some folks who haven't been able to complete the time needed because they reacted too strongly.

salexander421 Enthusiast
salexander421
Posted
  • Author

If you are asking because you have gone gluten free and are now doubting whether gluten is an issue or not then you could always challenge for at least 2 or 3 months and then get tested. There have been some folks that have done that and gotten a doctor derived diagnosis but usually they were very ill during the challenge and there are some folks who haven't been able to complete the time needed because they reacted too strongly.

I originally went gluten free for my daughter that I'm breastfeeding. She's had digestive problems from day one. My 3 year old also has digestive problems and we ended up going gluten free with her also. This was all before I was even aware of celiac disease. We first started suspecting celiac disease with our 3 year old, we had switched pediatricians because we weren't taken seriously about her GI issues and the new ped is who mentioned celiac disease. We took her to a GI and they went ahead and tested her even though she was gluten free already and of course her tests came back negative so we went ahead and did the gene test which turned up positive for DQ8. After a lot of debate we decided to do a gluten challenge with her so we could retest. We did not plan on challenging our 18 month old but it was almost impossible to keep her away from the gluten things our other daughter was eating so we decided to go ahead and challenge her too. This led me to reintroduce gluten back into my own diet and I started experiencing things again that I never really noticed before but had disappeared when gluten free.

Anyways, long story short. All three of us are getting near the end of a miserable 3 month gluten challenge. I think my anxieties are starting to creep up again and I'm starting to worry that we're just going to get negative results and this will all have been in vain. I guess I was just looking for some reassurance that if we do have celiac disease than we still have a chance of testing positive and that going gluten free didn't mess all that up.

In the end we are going gluten free again despite the results but we wanted to at least go through the testing process for a possible diagnosis.

It's been a stressful 3 months to say the least!

ravenwoodglass Mentor
ravenwoodglass
Posted

You have my sympathies it must have been a miserable 3 months. There is of course a chance of a false negative but hopefully after all you have been through the tests will be conclusive. Make sure you let the doctor know how miserable it has been as some will give a diagnosis based on the return of symptoms with the challenge even if the tests are negative.

Do get you hands on the actual reports also as some doctors will call a low positive a negative.

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

Celiac.com Sponsor (A8-M):


salexander421 Enthusiast
salexander421
Posted
  • Author

I hope the tests will be conclusive but I know that's not always the case :( I just got my genetic tests back and I have 2 copies of the DQ8 gene, just one more piece to my puzzle. My girl's GI is really good and very knowledgeable about celiac, he helped start the organization R.O.C.K. (raising our celiac kids), so I feel pretty comfortable with that. I just made an apt for me with a doctor that was recommended at celiac.com so I'm hopeful that she will be good as well. I will definitely be sure to let them both know that this has not been easy and there are definite symptoms we all 3 have. Just looking for some answers!

ILoveflowers74 Newbie
ILoveflowers74
Posted

Been doing a gluten challenge for 16 days. I didn't have any health insurance when I suspected gluten causing my many discomforts . I went gluten-free for relief....in April of 2010 And it did just that. I remember about a week after going gluten-free getting ready for work... I felt well rested and bent over to tie my shoes without gasping for air . Aches diminished gas and bloating gone . Amazing at how much better I felt over those 10 months. Don't get me wrong I had my days .. Cross contamination.. Questionable ingredients ??? . But what a difference.

I was diagnosed with osteopenia in 2000. After breaking my back. I couldn't believe I had a deficiency it didn't make sense to me. Drank gallons of milk and most food now is fortified with calcium and D.... . So I increased calcium and D and did weight bearing exercise For the next year . I repeated my dexascan a year later and my bone density got worse ... I stated to my doctor that it seemed to me that I wasn't absorbing it and it got brushed aside... Nothing happened for years after that. Until a lost pregnancy in oct09 I was very Nausous alllll the time tooting allllll the time I went through the holidays with an insatiable appetite severe bloat discomfort and distension . In January 2010 I realized all that holiday food was still in me . I had maybe gone to the bathroom maybe 3-4 times over the holidays needless to say I was miserable. I tried increasing fiber , drank lots of water and enemas... it only made me have hot flashes and stomach pains. With no ins I needed to self diagnose and fix myself. So yea I felt much better soooo much better after going strict gluten-free. However I don't have a black and white diagnosis. ..... So here I am day 16 of gluten challenge.....

How much longer do u all think I should wait before going for bloodwork.???

Btw I switched doctors.

ravenwoodglass Mentor
ravenwoodglass
Posted

Been doing a gluten challenge for 16 days. I didn't have any health insurance when I suspected gluten causing my many discomforts . I went gluten-free for relief....in April of 2010 And it did just that. I remember about a week after going gluten-free getting ready for work... I felt well rested and bent over to tie my shoes without gasping for air . Aches diminished gas and bloating gone . Amazing at how much better I felt over those 10 months. Don't get me wrong I had my days .. Cross contamination.. Questionable ingredients ??? . But what a difference.

I was diagnosed with osteopenia in 2000. After breaking my back. I couldn't believe I had a deficiency it didn't make sense to me. Drank gallons of milk and most food now is fortified with calcium and D.... . So I increased calcium and D and did weight bearing exercise For the next year . I repeated my dexascan a year later and my bone density got worse ... I stated to my doctor that it seemed to me that I wasn't absorbing it and it got brushed aside... Nothing happened for years after that. Until a lost pregnancy in oct09 I was very Nausous alllll the time tooting allllll the time I went through the holidays with an insatiable appetite severe bloat discomfort and distension . In January 2010 I realized all that holiday food was still in me . I had maybe gone to the bathroom maybe 3-4 times over the holidays needless to say I was miserable. I tried increasing fiber , drank lots of water and enemas... it only made me have hot flashes and stomach pains. With no ins I needed to self diagnose and fix myself. So yea I felt much better soooo much better after going strict gluten-free. However I don't have a black and white diagnosis. ..... So here I am day 16 of gluten challenge.....

How much longer do u all think I should wait before going for bloodwork.???

Btw I switched doctors.

If you have been off gluten for long enough to get well healed you should go back on for about 3 months. However if you felt good gluten free and are miserable back on gluten you really have your answer.

ILoveflowers74 Newbie
ILoveflowers74
Posted

3 months is a long time.... If my belly is so swollen like being pregnant and all kinds of symptoms and aching and pins and needles and horrible nausea and fatigue and so on and so on and on ......wouldn't it show up somewhere in a blood test.

love2travel Mentor
love2travel
Posted

After finding my sister was gluten intolerant I requested the bloodwork. My doctor and I were both shocked to find that it came back positive. So, I went off gluten immediately (for 5 months) then was told to go back on for my gluten challenge. I was on gluten for 3 months and LOVED IT! I had not experienced any pain, gas, bloating, GI issues, anemia or other deficiencies so it was quite frankly a wonderful 3 months. Then I had both a gastroscopy and colonoscopy - confirmed celiac disease. That was 2 weeks ago. So, now I am gluten-free for the rest of my life. I am hoping that I will eventually feel better although I have always felt well (tons of energy and so on). Perhaps I will notice things I hadn't in the past. We'll wait and see! :P

ravenwoodglass Mentor
ravenwoodglass
Posted

3 months is a long time.... If my belly is so swollen like being pregnant and all kinds of symptoms and aching and pins and needles and horrible nausea and fatigue and so on and so on and on ......wouldn't it show up somewhere in a blood test.

The antibodies have to build in the body to a pretty high level to be detected. You could try the blood panel and see what the results are, maybe it will show positive or a real low positive. If it comes back negative and you really feel you need a doctor derived diagnosis then keep eating gluten for a couple months more and retest. Do be aware that false negatives are not uncommon even for those that have never been gluten free.

ILoveflowers74 Newbie
ILoveflowers74
Posted

Thanks ravenwood . I just hope it all works out. I want my dx so I can go back to gluten-free and feeling better . I need the hard copy dx for my job and my family . Day 22 . I don't think I'm eating enough poison . I'm barely eating anything at all. so distended and not very hungry . I don't want to mess up the challenge , but I've got to work . I have a very physical job that is hard when your nauseas and muscle fatigued and achey. I'm trying to stay positive but there are so many false negatives talked about on here it scares me.

Archived

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

Go to topic listing

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

      High TTG-IgG and Normal TTG-IgA

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

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

  • Member Statistics

    • Total Members
      132,872
    • 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):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • 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! 
×
×
  • 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.