Jump to content

  • 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

Should I Go Ahead With A Biopsy?

jjgirl

Recommended Posts

jjgirl Newbie
jjgirl
Posted

Hello - This is my first time posting, so hope this all makes sense! I'm 35 years old and married with three children. I have been having a whole bunch of physical and mental issues going on for the last couple of years. For starters I was diagnosed with (severe) Hashimoto's desease back in 1994. Was quite sick at the time, but greatly improved after starting hormone therapy. Constipation and bloat did continue but was managable. Recently I started having new symptoms, the most alarming was a skin condition on my scalp called Lichen Planuspilaris. This is an autoimmune scarring alopecia that causes permanent hairloss. I'm seeing a Dermatologist (who specializes in hairloss), an Internist and a Naturopath. What I know from a range of tests is .... I tested positive for Endomysial Ab IgA, I was a 5 (weak positive) for Transglut IgA (tTG) - I had been Gluten-Free for 4 months when blood test was done. My vitamin D was low (22) and Ferritin very low (5). I have been experiencing fatigue and joint pain. My question is ... Should I go ahead with the biopsy? I know that the G.I. Doc will want me to go back on Gluten and I feel like my scalp may be starting to go into remission (which is all you can hope for with this autoimmune desease). I've started prescription iron pills, but really don't seem to be feeling too much better and I have had quite a bit of diarrhea. My hair has also been shedding (not related to the LPP mentioned above) which the Derm tells me is from my extremely low iron levels. I just hate to stir everything up with going back on the Gluten. Thanks for reading my long winded message.

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

Celiac.com Sponsor (A8-M):


Murph Newbie
Murph
Posted

You might want to think about the genetic test even it's also not 100% accurate. Biopsies quite often fail to get the right sample for a positive diagnosis. I've seen ppl say to tell the doc to take 20 samples instead of the usual 10, in order to up the chances of snipping the right spot.

And tho it's well known that you'd need to eat gluten for a proper blood test, I don't think it's that necessary for a biopsy. It takes months or years for the villi to heal, depending on the extent of the damage.

I can't imagine why the Dr wouldn't understand this.

happygirl Collaborator
happygirl
Posted

The fact that you had positives on EMA and tTG, even on a recently gluten free diet, indicates that you have Celiac Disease. Those are the two "best" blood tests for Celiac.

Given your other issues, I think it might do more harm than good to get the biopsy now. You are already sick and having issues. On the other hand, the procedure is good to check for other issues.

You DO need to be eating gluten for an accurate biopsy. The dietician at the Celiac Center at the University of Maryland (led by Dr. Alessio Fasano) spoke recently and said that even one week of a gluten-free diet can begin to dramatically alter the results of a biopsy.

best of luck to you.

aikiducky Apprentice
aikiducky
Posted

Why does the doctor want to do the biopsy? If it's to check for other possible problems, you don't need to go back on gluten, or if he wants to see how you're healing, you don't need to either.

If he doubts the diagnosis you have to ask yourself if you yourself doubt it. Personally I wouldn't, I don't know what could explain both EMA and TTG to come back positive other then celiac. Especially if you have noticed some slight improvement on the diet.

Don't let yourself be bullied into anything, only do it if you're convinced yourself that it's necessary.

Pauliina

marlene57 Newbie
marlene57
Posted

I agree with the above answers, but would be concerned about triggering other autoimmune diseases. I suffer from a few of them and know that they can become worse with stress...emotional and physical.

Stress can also trigger new autoimmune diseases.

I also would be very cautious and only go thru that if I thought there was a very good reason to do it.

Good luck and best wishes,

Marlene

jjgirl Newbie
jjgirl
Posted
  • Author
I agree with the above answers, but would be concerned about triggering other autoimmune diseases. I suffer from a few of them and know that they can become worse with stress...emotional and physical.

Stress can also trigger new autoimmune diseases.

I also would be very cautious and only go thru that if I thought there was a very good reason to do it.

Good luck and best wishes,

Marlene

Thank you so much for all of the very informative replys! - Jessica

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.