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Gluten detox, what to expect!

Kazbo
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Kazbo Rookie
Kazbo
Posted

Hi everyone,  I'm so new to this so be kind 😀. I have been experiencing diarrhea, bloating and a couple of other symptoms of gluten intolerance for the last 5 years. I have had a simple blood test in the past which I was told came back normal, it was the TTg ItA and my result was 0.2. The Internet tells me different things here so I've no real clue. Anyway as I am sick of experiencing these issues I decided to give gluten free a bash 5 days ago and see what happened.  Well, I have had ĺ mixed results, sometimes the diarrhea eases sometimes not, I have stomach craps and feel bloated today. Yesterday I came out in a rash which I have read sounds like dermatitis herpetiformis. I've never had this before!  Feeling miserable, worried and really confused tbh. Would this be normal if I didn't have any intolerance?  Is this what everyone went through?  Should I carry on? I have made an appointment with my GP to get some support but that's a few weeks away. Please she'd some light.  I have read quite a few threads but still my head spins. X

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trents Grand Master
trents
Posted

Welcome to the forum, @Kazbo!

Unfortunately, your original testing, with only the TTG-IGA antibody test being ordered, was less than thorough and I certainly would not rule out celiac disease (aka, "gluten intolerance") just yet. I would like to see you get a more complete celiac panel done with these tests ordered:

Total IGA

TTG-IGA

DGP-IGA

DGP-IGG

You would need to be eating generous amounts of gluten (the equivalent of 4-6 slices of bread daily) for several weeks leading up to the testing.

It is also possible that you may be suffering from NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not damage the villous lining of the small bowel as does celiac disease. NCGS is 10x more common than celiac disease but there is no test for it so, celiac disease must first be ruled out. 

You might also trial eliminating dairy and oats from your diet as a significant percentage of celiacs are intolerant of these two foods as well. 

Eating truly gluten free is much more of a challenge than most people realize so I wonder if you are actually accomplishing that in your current experiment. I offer this: 

 

 

Kazbo Rookie
Kazbo
Posted
  • Author

Thank you, for that info. 🙂

I have been pretty careful and researched everything I've eaten so far but I realise there is so much to learn. 

The test was not helpful or followed up, I think I just reached breaking point so decided to do my own thing and see. I just wasn't expecting these reactions. 

I also have a thyroid condition which I am aware has links with gluten issues.  

 

knitty kitty Grand Master
knitty kitty
Posted
(edited)

@Kazbo,

Yes, you should carry on.

I agree with @trents that more complete testing should be done before going gluten free.  

Since symptoms often worsen after reintroducing gluten after being gluten free, you may want to continue with eating gluten.  You will need to be consuming gluten for an endoscopy with biopsies which is the gold standard for diagnosing Celiac Disease.

Since you've had diarrhea for so long you should be checked for nutritional deficiencies.  Celiac Disease causes malabsorption of essential nutrients.  Nutritional deficiencies can damage the body. 

Thyroid problems can be caused by malnutrition or may be caused by a second autoimmune disease,  autoimmune thyroiditis, frequently found concurrently with Celiac Disease. 

Thiamine deficiency can precipitate thyroid problems.  Niacin deficiency can precipitate Dermatitis Herpetiformis.  

Getting a definitive diagnosis now can save you from health problems in future.  

Edited by knitty kitty
Typo correction
Kazbo Rookie
Kazbo
Posted
  • Author
51 minutes ago, knitty kitty said:

@Kazbo,

Yes, you should carry on.

I agree with @trents that more complete testing should be done before going gluten free.  

Since symptoms often worsen after reintroducing gluten after being gluten free, you may want to continue with eating gluten.  You will need to be consuming gluten for an endoscopy with biopsies which is the gold standard for diagnosing Celiac Disease.

Since you've had diarrhea for so long you should be checked for nutritional deficiencies.  Celiac Disease causes malabsorption of essential nutrients.  Nutritional deficiencies can damage the body. 

Thyroid problems can be caused by malnutrition or may be caused by a second autoimmune disease,  autoimmune thyroiditis, frequently found concurrently with Celiac Disease. 

Thiamine deficiency can precipitate thyroid problems.  Niacin deficiency can precipitate Dermatitis Herpetiformis.  

Getting a definitive diagnosis now can save you from health problems in future.  

Thank you for this information.  It's hard to think about going back to gluten at the moment as I've just been brave enough to take the leap. What you are saying makes sense though. Thank you 😊 

knitty kitty Grand Master
knitty kitty
Posted

I understand.  It's a bumpy ride to diagnosis.  What other diseases are diagnosed by harming oneself?  What happened to "First do no harm" -- the Hippocratic oath?  

Genetic testing and improvement on a gluten free diet is how I was diagnosed.  I couldn't finish a gluten challenge because going back to gluten after being gluten free for quite awhile made me extremely ill.  I knew I improved on a gluten free diet, but I needed to confirm I had the Celiac genes.  If I didn't have the Celiac genes, I would have had to keep looking for the causes of my health problems.  

Take a few deep breaths.  Think about it.  We support you which ever way you decide to go.  Some need those antibody numbers and Marsh scores, some don't.  

Best wishes.

trents Grand Master
trents
Posted

Ditto. An official celiac diagnosis is not worth permanently damaging your health.

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    • Ginger38
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      Okay, Thank you!! I already have thyroid problems and my total iron binding capacity is high which usually means low iron but everything else was normal, lower end but “normal” my hair falls out and my nails won’t grow without breaking but nothing is being treated iron wise.  I have started having palpitations and chest pain,  both of which seem to be attributed to exposure to gluten. I’ve also been having a lot of nightmares, anxiety, numbness and tingling, brain fog, spotting between cycles and acne. Idk if all those are relatable to gluten / celiac but I’m concerned  I’ve finally tipped my body/ immune system into a bad place. Is there anyway to detox and heal faster or treat these symptoms if related to gluten ? 
    • knitty kitty
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      @Alibu, Start with this study... High-dose thiamine supplementation improves glucose tolerance in hyperglycemic individuals: a randomized, double-blind cross-over trial https://pubmed.ncbi.nlm.nih.gov/23715873/ "Conclusion/interpretation: Supplementation with high-dose thiamine may prevent deterioration in fasting glucose and insulin, and improve glucose tolerance in patients with hyperglycemia. High-dose thiamine supplementation may prevent or slow the progression of hyperglycemia toward diabetes mellitus in individuals with impaired glucose regulation." They used 100 mg of thiamine three times a day.  They don't say which kind of thiamine was used.  Benfotiamine is my recommendation because it has been shown to promote intestinal health and helps with leaky gut and SIBO.  Thiamine forms including Benfotiamine and TTFD are safe and nontoxic even in higher doses.   The old "gold standard" diagnosis is changing.  It must be confusing for doctors as well.  I went through all this myself, so I understand the frustration of the vagueness, but set your course and watch as your health improves. Keep us posted on your progress!   P.S. here's another link.... https://pubmed.ncbi.nlm.nih.gov/39642136/
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