Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Biopsy done today - low iron, DH, autoimmune kidney disease


amanda3

Recommended Posts

amanda3 Newbie

Okay.

Long story short - I've had itching blisters coming and going for at least 10 years, I'm 27 now. When I was 23 I got diagnosed with an autoimmune kidney disease. Ever since then I've been very careful with my diet and avoiding, but not completely cutting out gluten. I've had stomach problems since I was a kid. Had acne since I was 14. Diagnosed with PCO. Always feeling tired. Can eat tons of food and never gaining any weight. 

Recently I found out I am anemic, Ferritin was 7 (range is 10-70 I think) I was also deficient in D-vitamin. They took transglutaminas tests but it was negative.

I started eating gluten again in February, and my blisters and ezcema like rashes came back quite quickly. I know a gastroenterologist and told him about my low iron, my blisters etc. And he immediately said that it sounds like celiac disease. He scheduled a gastroscopy (they go in with a camera through the mouth and take biopsies from the small intestine) that I did today.

The doctor took 3 biopsies and said that it looked like the villi was flattened. He also said that I could start a gluten free diet if I wanted to before the test results comes back.

I'm just confused right now...

shouldn't they do a skin biopsy on my blisters as well? I read about ppl having DH who do that and get diagnosed that way.

how can the blood tests be negative and the biopsy not?

if i go on a non gluten diet now, my blisters and rashes will go away which is good ofc, but then if the biopsy come back negative, they can't do a skin biopsy?

It would make so much sense to me if I'm celiac. Therefore I'm scared the biopsy wont show anything since I've been going on and off gluten for years. Although the doctor said it looked like I am celiac? And the blisters can't be anything else than DH!! And the low iron and everything. Ugh. I just want the results now... And know for sure.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

A GIvdoctor isn’t going to biopsy your blisters.  You need a dermatologist for that.

amanda3 Newbie
6 minutes ago, kareng said:

A GIvdoctor isn’t going to biopsy your blisters.  You need a dermatologist for that.

Yes I totally see that, but why isn't the GI Doc sending me to a derm? I showed him the blisters and he said yeah i dont know you have to see a derm. But if they're going to diagnose the same thing, celiac disease, shouldnt he send me there ? To really be sure

tessa25 Rising Star

There are several blood tests. You have to be eating gluten daily for 12 weeks before the blood test. You only need a positive on one blood test to result in a GI doing the endoscopy/biopsies. You probably didn't do the full celiac panel. Since the doc saw flattened villi he's probably thinking the biopsies will confirm the flattened villi and you'll have your celiac diagnosis.

 

amanda3 Newbie

I'm surprised they only take one of these tests as a standard, the transglutaminas? What are the other tests? Should I get these checked even though I already had a biopsy - meaning could the test be positive even though the biopsy is not? 

tessa25 Rising Star

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

It's up to you whether you test the rest.

cyclinglady Grand Master
2 hours ago, amanda3 said:

I'm surprised they only take one of these tests as a standard, the transglutaminas? What are the other tests? Should I get these checked even though I already had a biopsy - meaning could the test be positive even though the biopsy is not? 

Unfortunately, it is about catching as many celiacs for the least amount of money.     Some people with DH will be seronegative (negative on all the blood tests).   Based on your low iron stores and the fact that you already have an AI disorder, and if your GI visually saw flattened villi (and you have what looks like DH), you probably do not need to see a dermatologist.  Wait for the intestinal biopsy results.  If negative, then consider a dermatologist consult or trial the diet.  

In the meantime, read all the threads in the DH section.  There is lots of valuable advice.  I do not have DH, but I understand that you need to be super strict with the diet.  

 


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran
4 hours ago, amanda3 said:

I'm surprised they only take one of these tests as a standard, the transglutaminas? What are the other tests? Should I get these checked even though I already had a biopsy - meaning could the test be positive even though the biopsy is not? 

A positive on any antibody test is a positive celiac result.  And yes, sometimes people have positive blood antibodies but the gut damage is not severe enough to show up yet.  In people with DH, some of the IgA antibodies are deposited in the skin, so the blood test may not show a great number of them.

plumbago Experienced

It sounds like you do have it, but that you’ll just need to wait a little longer to get  confirmation. Something similar happened to me - the gastro said that upon visualization it seemed that the diagnosis would come back as celiac disease, but that they’d wait for the biopsy for confirmation. As for why the GI didn’t reach out to dermatology, a couple of reasons - only one of which is cynical :).

You can always get a biopsy of a patch later on, if you want. There are other reasons, as far as I know, that you can have flattened villi, but the likeliest is celiac disease. As for why your transglutaminase came back negative, I’m not sure of the timeline of when you were tested as it relates to when you were or were not eating gluten. Could that have had something to do with it? Or, lab error. Can't really say.

 

amanda3 Newbie

But can I get a biopsy of a patch later if I stop eat gluten now? Maybe the biopsy wont show anything then

squirmingitch Veteran
48 minutes ago, amanda3 said:

But can I get a biopsy of a patch later if I stop eat gluten now? Maybe the biopsy wont show anything then

No. The eat gluten rules apply to the dh biopsy the same as to the celiac blood panel. If you're gluten free, you're sunk.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,915
    • Most Online (within 30 mins)
      7,748

    Nana Lonnie
    Newest Member
    Nana Lonnie
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jack Common
      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
    • Jack Common
      My old results (almost a year ago) are: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months and after I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   I didn't have any symptoms now except tiredness but I think it's just work. I'm not IgA deficient as you can see so I don't need to do this Deamidated gliadin peptide IgG test. But I do because it's sometimes not in the normal range. What do you think this time? I think I don't have celiac disease. But this test... 
    • Wheatwacked
      @plumbago, I found a good PDF on cholesterol:  Unlocking the mysteries of VLDL: exploring its production, intracellular trafficking, and metabolism as therapeutic targets I just started it, but it may have answers for us, with whacky cholesterol.  The pharmaceuticals don't seem to be interested in anything but statins.   "The nicotine in tobacco causes a decrease in the HDL cholesterol level. " Maybe you should start smoking? 🤪 I have high LDL and low HDL.  It is genetic mutations in the LDLR, APOB, PCSK9, or LDLRAP1 genes. My whole family is on statins for Familial Hyperliperdemia except me.  December I had ultrasound and cat scan for Carotid Artery blockage and both sides are above 85% blockage.  I started on Atorvastatin and that made me weaker than ever, even with CoQ10.  I asked for and got prescription for 2000 mg/day Nicotinic Acid B3 and in the 3 weeks my numbers changed. I am feeling realy good lately.  Stronger and more flexible.  Sleeping better.  Getting roto router (TCar) as soon as I get clearance from a cardiologist.  I expect that by my next blood panels in April to be even better. I am beginning to believe that like vitamin D where the RDA only accounts for preventing Rickets, the RDA for B3 is way underestimated.   From Oct 22 to Jan 17: A1c from 13.5 to 10.2 eGFR from 55 to 79 Triglyeride from 458 to 362 Total cholesterol from 245 to 264 HDL from 27 to 44 VLDL from 84 to 68 LDL from 134 to 154
    • plumbago
      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
    • trents
      Well, I have the opposite problem. My LDL has been moderately high for years. I eat healthy and exercise regularly but can't seem to move that meter. I used to be on a statin (and my doctors want me to go back on one) and it brought both HDL and LDL down but the ratios never changed. I think a lot of that cholesterol stuff is just baked into the genes.
×
×
  • Create New...