Should I Go Ahead With A Biopsy?

[jjgirl]

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.

[Murph]

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]

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]

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]

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]

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