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Doctor recommended not eating gluten before biopsy

natalieccox

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natalieccox Newbie
natalieccox
Posted

Hi all, 

I had my biopsy two days ago.  My blood test was 6 weeks ago. I went gluten free the day of my blood test results as per the recommendation of my GP. I presented with tingling in my groin, legs, and eventually hands. No gastrointestinal symptoms at all.  This was constant for two weeks prior to my blood test and went away after two weeks of eating gluten free. Doc said my intestine looked good, so if it is celiac, it's early and an unusual presentation. She told me she took a lot of samples. 

Results were: 

IgA - Normal (3.31 g/L)
tTG - Positive (12 U/mL)

My doctor (GI who has specialized in Celiac's for 35 years - recommended by other GIs that my dad knows) told me that as I have only been gluten free six weeks that damage would still be present (as an adult - I'm 28). She recommended I not eat gluten before the biopsy. I did not. I'm now waiting for the results back and am worried about a false negative and also worried about what other things would cause elevated tTG. GI said it could be other autoimmune disorders but that we'd cross that bridge when we get to it. 

Has anyone heard of not eating gluten before the biopsy? Everything I read says you have to go on the gluten challenge, but this docotr was so highly recommended and is supposed to be best in the province, so I feel like she would know. My dad is also a physician and knows her personally/professional, so I do think she would be particularly careful with my care. 

I eat vegan at home and am vegetarian and my favourite meat substitute is seitan, so a large part of my diet previous to this was gluten.

Thoughts? I'm a bit freaking out. 
 

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cyclinglady Grand Master
cyclinglady
Posted

Hi Natalie!  

It seems your GI is not really celiac-savvy.  He/She does not even follow the Canadian Celiac Association and the Canadian Health government recommendations that you must continue to consume gluten until the endoscopy is done!  

Open Original Shared Link 

Open Original Shared Link

I can tell you that the British, Australian and US (along with a kazillion other countries) say the same thing.

Taking additional celiac blood tests will not help as you would have to go back on gluten for 8 to 12 weeks.  You are really in a tough spot. 

You did say that you felt better, so many that's your answer.  See if your doctor will diagnose with you with celiac disease or go back and gluten and get a complete celiac blood panel (not just the TTG which is good but does not catch all celiacs).  

I hope you figure it out.  

 

natalieccox Newbie
natalieccox
Posted
  • Author
 

Hi Natalie!  

It seems your GI is not really celiac-savvy.  He/She does not even follow the Canadian Celiac Association and the Canadian Health government recommendations that you must continue to consume gluten until the endoscopy is done!  

Open Original Shared Link 

Open Original Shared Link

I can tell you that the British, Australian and US (along with a kazillion other countries) say the same thing.

Taking additional celiac blood tests will not help as you would have to go back on gluten for 8 to 12 weeks.  You are really in a tough spot. 

You did say that you felt better, so many that's your answer.  See if your doctor will diagnose with you with celiac disease or go back and gluten and get a complete celiac blood panel (not just the TTG which is good but does not catch all celiacs).  

I hope you figure it out.  

 

My doctor has been highly recommended on this forum, is the chair (or used to be, not sure) of the Canadian Celiac Association Professional Advisory Board, has won Gastrointestinal awards from the Canadian Gastrointestinal Association for her work with celiac. Etc etc.. (Dr. Connie Switzer). I struggle to believe that she is not celiac-savvy. 

cyclinglady Grand Master
cyclinglady
Posted
 

My doctor has been highly recommended on this forum, is the chair (or used to be, not sure) of the Canadian Celiac Association Professional Advisory Board, has won Gastrointestinal awards from the Canadian Gastrointestinal Association for her work with celiac. Etc etc.. (Dr. Connie Switzer). I struggle to believe that she is not celiac-savvy. 

Okay.  You did ask for an opinion.  I am not a doctor.     I was just repeating what I read on the Canadian websites.  It seems that your doctor isn't not following standard protocol for some reason.   Obviously, you are concerned about how your GI has handled your case.   I hope you find answers.

I wish you well!  

Jmg Mentor
Jmg
Posted

Don't worry! I understand exactly how you feel, been there also.  The challenge period was really unpleasant for me and although I continued to eat gluten up to my endoscopy, I did wonder if I'd eaten enough -  as it was making me so ill. I've no idea whether the gut is as quick to change from going gluten free as blood results can. What may be helpful to you however is writing down the concerns you have concerning the false negative risk so that when you see the Doctor you raise them effectively and get a clear answer on this or any other question.

The key point however is that you can't alter anything now, just wait for the biopsy results to come back, there's only a certain number of cases which can be spotted by the naked eye. 

If it's negative for celiac and you still have doubts there's nothing to stop you trialling a gluten free diet and keeping a food diary to see if you can get your own answers. I appreciate being vegan would make this more challenging, but a quick google threw up some nice looking choices: Open Original Shared Link which would help you avoid the devilish sounding seitan!

Bottom line. Don't worry. You've found a great site with lots of support and info available. :)

Sugarcube Rookie
Sugarcube
Posted

I cant understand why your GI would tell you to go gluten-free, especially considering your mild symptoms. 

Nevertheless, a full celiac blood panel  with the celiac gene test, could help shed light on your celiac status.

 

 

squirmingitch Veteran
squirmingitch
Posted
 

Hi all, 

I had my biopsy two days ago.  My blood test was 6 weeks ago. I went gluten free the day of my blood test results as per the recommendation of my GP. I presented with tingling in my groin, legs, and eventually hands. No gastrointestinal symptoms at all.  This was constant for two weeks prior to my blood test and went away after two weeks of eating gluten free. Doc said my intestine looked good, so if it is celiac, it's early and an unusual presentation. She told me she took a lot of samples. 

Results were: 

IgA - Normal (3.31 g/L)
tTG - Positive (12 U/mL)

My doctor (GI who has specialized in Celiac's for 35 years - recommended by other GIs that my dad knows) told me that as I have only been gluten free six weeks that damage would still be present (as an adult - I'm 28). She recommended I not eat gluten before the biopsy. I did not. I'm now waiting for the results back and am worried about a false negative and also worried about what other things would cause elevated tTG. GI said it could be other autoimmune disorders but that we'd cross that bridge when we get to it. 

Has anyone heard of not eating gluten before the biopsy? Everything I read says you have to go on the gluten challenge, but this docotr was so highly recommended and is supposed to be best in the province, so I feel like she would know. My dad is also a physician and knows her personally/professional, so I do think she would be particularly careful with my care. 

I eat vegan at home and am vegetarian and my favourite meat substitute is seitan, so a large part of my diet previous to this was gluten.

Thoughts? I'm a bit freaking out. 
 

I'm sorry and I'm not being combative here but I really don't understand what the purpose of your post was. What exactly are you asking? Since you are so confident & defensive of your GI doc despite all the current recommendations in the UK, Oz, the US & so many other places then why are you freaking out?

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natalieccox Newbie
natalieccox
Posted
  • Author
 

I'm sorry and I'm not being combative here but I really don't understand what the purpose of your post was. What exactly are you asking? Since you are so confident & defensive of your GI doc despite all the current recommendations in the UK, Oz, the US & so many other places then why are you freaking out?

I was wanting to know if anyone else had heard of a doctor saying that if you had only been gluten free for a short period of time, you did not need to go back on gluten. I have seen the recommendations, but (not trying to be defensive of my doc, but trying to provide context) my doctor is the chair of the body that comes up with the recommendations and has been for 20 years in Canada as far as I can tell from Google. I don't really know why my doctor said something for me outside of the guidelines, but I do know that she is regarded as an expert of celiac and knows what the recommendations say.

I'm freaking out a bit because this is all very new to me, I'm waiting for biopsy results, and I have no idea what is wrong with me if it's not celiac. My GP said they would look at doing an MRI (I think?) to look at MS. The GI said other autoimmune disorders could cause elevated tTG. The advice about what other tests might be useful was also appreciated. 

cyclinglady Grand Master
cyclinglady
Posted
 

I was wanting to know if anyone else had heard of a doctor saying that if you had only been gluten free for a short period of time, you did not need to go back on gluten. I have seen the recommendations, but (not trying to be defensive of my doc, but trying to provide context) my doctor is the chair of the body that comes up with the recommendations and has been for 20 years in Canada as far as I can tell from Google. I don't really know why my doctor said something for me outside of the guidelines, but I do know that she is regarded as an expert of celiac and knows what the recommendations say.

I'm freaking out a bit because this is all very new to me, I'm waiting for biopsy results, and I have no idea what is wrong with me if it's not celiac. My GP said they would look at doing an MRI (I think?) to look at MS. The GI said other autoimmune disorders could cause elevated tTG. The advice about what other tests might be useful was also appreciated. 

This may seem dumb, but did they check you for a B-12 deficiency since you are vegan?  Also I have Hashi's Thyroiditis which is another autoimmune disorder yet my TTG is always negative (DPG positive).  What I am trying to say is that a high TGG may be linked to other AI issues.  But that's "MAY".  So, try not to worry! 

 

natalieccox Newbie
natalieccox
Posted
  • Author
 

This may seem dumb, but did they check you for a B-12 deficiency since you are vegan?

Yes. It was 196 pmol/L. Iron was 37 ug/L. Both on the lower end of the normal range, but definitively in the normal range. I did start taking B12 and iron supplements after going gluten free because a lot of my B12 and Iron came from fortified seitan products. 

cyclinglady Grand Master
cyclinglady
Posted

Iron deficiency anemia was my main symptom (no tummy issues).  My ferritin (iron stores) were a 2.  I did have tingly legs but my B-12 was very high (over 2,000).  But it appears that I can not process any man-made vitamin b-12.  Please ask for follow-up testing on your vitamin and mineral status.  You can cause harm from taking too much iron!  

Please don't worry about MS.  My MIL had it and lived a long lovely life.  I strongly suspect she also had celiac disease but that is a different story.    It is good that your doctors are investigating celiac disease.  Waiting is hard!  Visually, my endoscopy results looked great.  The biopsies found damaged villi.  So, I can understand your impatience to get those results!  Did you know that anxiety is a major symptom of celiac disease?  ;)

 

frieze Community Regular
frieze
Posted

B12 of under 500 with symptoms is not acceptable.  there are three forms of B12 commercially available: 

hydroxocobalamin, methylcobalamin, and cyanocobalamin 

the first two are the preferred, some can not use third at all.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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