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Gluten free diet - are these symptoms normal?

Ems10
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Ems10 Newbie
Ems10
Posted

Hi. So for a month or two I had been experiencing extreme pain around my left rib going right up to underneath my breast, I went to hospital and the GP many times and one day it just came across my mind maybe I’m celiac/ gluten intolerant (celiac runs in my family)! I instantly stopped consuming anything with gluten (tbh everything I was eating was full of it) and the day I stopped having gluten the pain instantly disappeared, the next day I had a GP appointment about the pain & I informed him it just stopped instantly and explained why I believe I’m intolerant! I’m waiting on test results as of now, however I have still had absolutely no pain whatsoever today I’ve started to have diarrhea which I haven’t had in at least two months, I was severely constipated whilst consuming gluten! Just wondering would this be a symptom of gluten withdrawal? I’ve done a grocery shop from the “free from” gluten section, I’ve been very careful as I’m terrified the pain will start again! 

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Wheatwacked Veteran
Wheatwacked
Posted

Welcome @Ems10,

Isn't is wonderful how a simple change helps.

Gluten free eating is not a punishment.  It does take attention to details when buying processed foods.

 

trents Grand Master
trents
Posted

Maybe you picked up a little intestinal virus? Maybe some ingredient in the gluten free processed foods you've been consuming is causing this. In order to simulate the texture that wheat provides, a lot of gluten free products contain ingredients that may cause digestive distress. Xanthan gum and similar polysaccharides are among the chief offenders.

Scott Adams Grand Master
Scott Adams
Posted

You mention that you are waiting on your test results--did they do a celiac blood panel? If so, were you eating lots of gluten in the 6-8 weeks leading up to the test?

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

Ems10 Newbie
Ems10
Posted
  • Author
1 hour ago, Scott Adams said:

You mention that you are waiting on your test results--did they do a celiac blood panel? If so, were you eat lots of gluten in the 6-8 weeks leading up to the test?

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

Thanks for your reply! I’m really not too sure, the doctor just took a few tubes of blood & that’s all I know 🥹

Scott Adams Grand Master
Scott Adams
Posted

It might make sense for you to find out if they've run a celiac disease test on you, and if not, consider planning for it.

Scott Adams Grand Master
Scott Adams
Posted

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

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trents Grand Master
trents
Posted

@Ems10, celiac diagnosis normally involves two steps. The first one is serum antibody testing which you may have already have had done and are waiting on the results. The second step involves and endoscopy (aka, gastroscopy) with biopsy of the small bowel lining. This second step is typically ordered if one or more antibody tests were positive, is a confirmation of the serum antibody testing and is considered the gold standard diagnostic test for celiac disease. Now hear this, you should not be eating gluten free weeks or months in advance of either kind of testing. Prematurely going on a gluten free diet can and will sabotage the results of the endoscopy/biopsy should you get a referral to a GI doc who would want to do that. Eliminating gluten from the diet causes causes inflammation to subside which allows the small bowel ling to heal such that the damage they would be looking for is no longer there.

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    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Welcome to the forum, @WildFlower1! The reason you are seeing conflicting results when you research the length of time recommended for doing the "gluten challenge" is that the guidelines have recently been under revision. So there are two components: 1. amount of daily gluten consumption and 2. duration of that amount of daily gluten consumption Recently, the guidelines have been under revision because the medical community was sensing the previous standards were too relaxed, particularly in the daily amount of recommended gluten consumption. The more recent guidelines seem to be calling for higher amounts of daily gluten consumption over (perhaps) as shorter period of time. So, it is becoming a daily minimum of 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks. Personally, I would recommend that amount of consumption be extended from two weeks to four weeks to ensure valid testing. Your Immunoglobulin IgA at 1.25. Was that within normal range? If that one is low, you are IgA deficient and other IgA test results cannot be trusted. But regardless of whether or not you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same, namely, a gluten free diet. What would you do different if you had a more confident differential diagnosis? And there are other reasons for the development of osteopenia/osteoporosis that you probably should explore. Are you on any serious supplementation for D3 and magnesium?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      The results of my blood tests after 4 weeks: *Tissue Transglutaminase Ab IgA —->   “<0.5 NEGATIVE” *Immunoglobulin IgA —-> “1.25” *Deamidated Gliadin peptide Ab IgG —-> “<0.5 NEGATIVE”    
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Hi there, I have been scouring the forums, medical journals, celiac websites, speaking to my doctor and there seems to be a contradiction in the exact amount of time one must do the gluten challenge for a blood test. Let me please express my gratitude for taking your time to help! I will try and keep this short. In a nutshell, I am positive genetically for celiac. Previously for many years 10+ I have been on a strict gluten free diet. At a very young age, I had infertility, hair loss, low iron, stomach problems, neurological symptoms, continued low bone density etc. etc. all the symptoms that line up with celiac.  I could never get an “official diagnosis” because I was not eating gluten for years.   Recently, I had a bone density scan, and was shocked at the results. I am young and my low bone density is continuously lowering. This lead me  to seriously consider doing the celiac blood test to confirm if I actually have celiac. Years ago, I had an endoscopy and they did a biopsy saying it was negative for celiac - but I had been on a gluten free diet for years. Now, I asked my doctor if I can start the gluten challenge and get this over with. My doctor said two weeks then get the blood test. I have been having 2-3 pieces of bread daily. After four weeks of doing this, I went for the bloodwork - it came back negative for celiac. I am continuing to eat bread daily, it has now been over 6 weeks. I am not able to get an endoscopy. Please, from your experience how long really must I eat bread daily to ensure I do not get a false negative blood test for celiac? I have read up to 12 weeks. One doctor advised this is foolish to even do this gluten challenge as I am damaging my body. My other doctor said 2 weeks eat it, but it showed negative. But with my recent continuous lowering of bone density I personally need to rule celiac out.   Thank you VERY much for your help, I truly appreciate it!!
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    • Scott Adams
      Conflicting results

      By Scott Adams · Posted

      It's possible he's in the early stages of celiac disease, and it has been caught before villi damage. The blood test results so far do indicate possible celiac disease, as well as his strong family history of celiac disease. If his symptoms get better on a gluten-free diet this would be another strong indication. Personally I think it's definitely better to proceed on the safe side and go gluten-free, rather than to risk severe villi damage and all that comes with it.
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