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Help with diagnosis


Jo hay

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Jo hay Newbie

Hi all this is my 1st time on a forum and I was looking for a little help/knowledge on my radiology report my doctor managed to get hold off but I still haven't heard from the hospital doctor. I was sent for a biopsy via endoscopy due to years of being iron deficient, fatigue, joint stiffness and a host of neurological symptoms.  My reports state's: 

Microscopy shows duodenal mucosa with mixed mild chronic inflammation cell infiltration within lamina propia associated with some crypt hyperplasia.  

Does anyone k ow what this means. I was give the blood tests a snort while back but they came back negative.  I did mention to my doctor that I had gone gluten free as I was diagnosed last year with autoimmune Hashimoto thyroid disease and read going gluten free helped with that but my doctor did the blood test anyway.  When the test came back I noted on the bottom of the report a little foot note stating you must be on a gluten diet for at least 6 weeks before the test or the test is invalid. I called the doc and explained I hadn't been on a gluten inclusive diet and he said "well the test was negative so you don't have gluten sensitivity." 

I'm so confused now as the biopsy states the above.  Still waiting on the response from the hospital.

Could anyone help with the above

Many thanks Jo


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Ennis-TX Grand Master

Yeah if your gluten free the blood test will be negative...it is testing for antibodies to the gluten proteins....if you not eating gluten your not going to have them in you blood. There is a gluten challenge that needs to be done where you eat gluten every day for like 12 weeks to raise the antibodies for the test. The endoscope like wise requires gluten to be eaten daily for 2 weeks. If you have been gluten free for a extended amount of time and cealic your damage could have healed.
Open Original Shared Link
Though the medical gluten free is a bit different then diet gluten free and more strict, (not doubting you just saying) so you could be having tiny amounts of gluten or other issues still causing your iron issues.

In regards to your iron, try taking vitamin C supplements and eating high iron foods like red meat, or if vegan pea and pumpkin seed protein. I found my iron did not improve til I started the vitamin C supplementation.

cyclinglady Grand Master
6 hours ago, Jo hay said:

Hi all this is my 1st time on a forum and I was looking for a little help/knowledge on my radiology report my doctor managed to get hold off but I still haven't heard from the hospital doctor. I was sent for a biopsy via endoscopy due to years of being iron deficient, fatigue, joint stiffness and a host of neurological symptoms.  My reports state's: 

Microscopy shows duodenal mucosa with mixed mild chronic inflammation cell infiltration within lamina propia associated with some crypt hyperplasia.  

Does anyone k ow what this means. I was give the blood tests a snort while back but they came back negative.  I did mention to my doctor that I had gone gluten free as I was diagnosed last year with autoimmune Hashimoto thyroid disease and read going gluten free helped with that but my doctor did the blood test anyway.  When the test came back I noted on the bottom of the report a little foot note stating you must be on a gluten diet for at least 6 weeks before the test or the test is invalid. I called the doc and explained I hadn't been on a gluten inclusive diet and he said "well the test was negative so you don't have gluten sensitivity." 

I'm so confused now as the biopsy states the above.  Still waiting on the response from the hospital.

Could anyone help with the above

Many thanks Jo

I am not a doctor, but it seems that despite being on  a gluten free diet, your biopsy has shown intestinal damage.  Read this link from the Celiac Disease Foundation about your crypt hyperplasia and inflammation:

Open Original Shared Link

Exactly which celiac tests were ordered?  I can tell you that in order to save costs and still catch a lot of celiacs, the TTG has been the preferred test (though this is changing).  The problem is that some folks, like me,  (who also have Hashimoto’s but I am not sure there is an actual link) have elevated DGP antibodies instead.  I also test negative on the EMA test as well.  If my doctor had not run the entire celiac panel, my diagnosis would not have been caught.  Then there are about 10% or so of celiacs who are seronegative.  This is why intestinal biopsies still remain the “GOLD” standard in diagnosing celiac disease.  

There are probably other scenarios that could have occurred (e.g. not really complying well in the gluten free diet and that can happen despite your best efforts).  Hard to guess.  

It can be tricky to get a diagnosis!  

I just want to add that I had Hashimoto’s some 15 years prior to my celiac disease diagnosis.  After two years on  the gluten-free diet, my nodules and thyroid enlargement are gone. I also have no longer had any hypo to hyper swings.  Unfortunately, the damage to my thyroid is permanent.  I have to take thyroid hormone replacement for the rest of my life.  Did I stop the destruction of my thyroid because I went Gluten Free or because I finally treated my celiac disease and that calmed down my immune system?   Who knows?  My bet is on treating my celiac disease.  

Jo hay Newbie

Thanks for the reply Ennis_TX and cycling lady I will try the Vit c supplements along with the iron, sounds a good idea. The letter regarding my blood work didn't state figures just said negative which is a bit useless.  I'm back on iron supplements from the doctor.  I wasn't on a medical gluten free diet as I had no idea about celiac it was only me cutting out gluten as I was trying to eat healthy for my hashimoto thyroiditis which I also knew nothing about until I was diagnosed with that so its been a huge learning curve for me.  Apparently Hashimoto thyroiditis and celiac are very commonly found together so the hospital doctor told me, that's why he didn't redo the blood test instead went straight for the biopsy of which the results are what I typed above.  Right now I'm not sure what to eat I want to stay as healthy as possible. Just getting g frustrated waiting  on docs to tell me the best route. Going by the biopsy results I don't know if that means Celiac's or not. I guess I'll just have to wait and see.  

thanks again for the replies

Jo

squirmingitch Veteran

Get a copy of your celiac panel blood work. You should always do this as a matter of course anyway. If you post the results of the blood panel here, along with the reference ranges, we can help interpret it & tell you if you were given the full panel. Lots of docs are misinformed & think you have to be off the charts high in order to be celiac which is incorrect but we get plenty of people being told they are negative when they, in fact, are not. A positive is a positive and just because it's a weak positive does not negate the fact that it's positive or just b/c one doesn't test positive on ALL the tests, does not mean they are negative. Many docs don't realize this. DUH!

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    • xxnonamexx
      Try a multivitamin maybe it will cover what you are deficient in.
    • cristiana
      Agreed, and I can't remember exactly and haven't got time to check, but I think my blood didn't normalise for eight years! For years I read this forum thinking why can't I get my numbers down - everyone else manages to.   But my gastroenterologist didn't seem to worry about it, which makes me think he either thought I wasn't complying to the diet, or he'd seen similar cases.
    • trents
      Yes, being off gluten for 3 months would likely yield negative results. To get accurate testing redone you would need to restart gluten consumption for several weeks (the "gluten challenge") to the tune of at least 10g of gluten daily (about the amount found in 4-6 slices of wheat bread).
    • trents
      That is one of the tests covered in the article I linked you above.
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      Antibodies to Deamidated gliadin peptides.  It is another celiac antibody test. The main test is the one you had, TTG,  But a full panel will also include DGP IgA and IgG.  I was positive on all of them!
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