What Do I Do?

[Kfrog]

Hi! I'm so glad to find this place. My mother (who has Celiac) mentioned it might be good to get some advice here. Thanks in advance! I really hope this is the right place to ask, please let me know if I'm being rude or should post elsewhere!

 

For the last three years I've had:

Bloating

Extreme gassiness

Diarrhea (often three to four times a day)

Abdominal soreness

Abdominal pain

Bloody diarrhea

Bone/joint pain

 

I went to a Celiac center due to my mom having Celiac and they originally were like "Oh, IBS" but once they realize I was my mom's daughter, they did a bunch of bloodwork. I don't have the tests handy, but they indicated Chron's disease and I remember that CRP was ridiculously high.

 

I underwent an endoscopy and colonoscopy. I got a call saying the biopsies were all negative and that I should maybe try a gluten free diet if I wanted to, and otherwise to assume I "just" had IBS. I accepted this and continued to try to manage my symptoms.

 

My doctor sent me to a rheumatologist based on some weird "ANA" results. The doctor was quite mean and only wanted to prescribe psychiatric medications, despite no psychiatric issues other than being a bit depressed that my bum is constantly chapped! (Literally I walked in, he looked at some test results, and was like "you probably need psych meds" and started to write out a script for Prozac. I stood up and left and filed a complaint.)

 

In the last six months, the pain got a lot worse. I went to the ER twice based on horrific stomach pain that had me think I had a colon blockage or something. Diarrhea three or four times a day, sometimes bloody, generally miserable stomach pains. I asked my old doctor to send me a copy of my biopsies. Quite clearly in the pathology report it states "indicative of mild/beginning celiac disease."

 

Since I currently don't have good insurance coverage, I went rogue and am three months into a completely gluten free, dairy free, caesin free, diet. I feel a lot better and am down to maybe one or two episodes of diarrhea a week. 

 

My insurance coverage starts soon and I'm not sure what to do. Are there more tests I should ask for? Do I want to/have to go through the biopsies again? If so, I'll have to start eating gluten again and I really don't feel like being that miserable again. Does this sound like celiac to you? What would you do if you were me?

 

[BlessedMommy]

Sounds like celiac to me, especially with the positive biopsy. What did your bloodwork say?

 

I don't see why you'd have to go back to eating gluten again, though, especially since:

 

A) Your biopsy was positive

You experienced symptom resolution with the gluten-free diet

C) Celiac runs in your family

[mamaw]

My opinion  is  if  you are  happy  with  the  better  health  you are  starting  to have  &  can  live  with  the pathology  report  then I would  never  subject  my body to ever eating gluten again.. And  then  lets  not forget  that  your  parent  has celiac as well....for  me  those  two  would  seal it for  me..... the  biopsies  could  be  negative  just  because  they  didn't  hit  a  spot that  may have  shown  damage or  maybe  they  only took one  biopsy,   

In the  end  the decision  is  yours  to make......everyone  is  different  some  just  feel better  &  don't  care  about  a  piece  of  paper stating  "celiac"   others  need  to  have  that  documentation  to  feel  the  necessity  of the  gluten-free  lifestyle....

[BlessedMommy]

That is bewildering that the doctor would state that the biopsy was negative, when your biopsy found evidence of celiac. If it were me, I would take that copy of the pathology report and take it to a doctor (a new one if need be), get that diagnosis and keep eating gluten free for life.

 

It seems like the "negative biopsy" could have been a communication error.

[nvsmom]

I'm glad you are feeling better in spite of the mediacl advice you received. That's a crying shame that they did not share the correct results of your biopsy with you!

 

It sounds like celiac disease to me too.  I think you did the right thing going gluten-free when you did.  If you decide to do more testing, you'll need to resume eating gluten (equivalent of 1-2 slices of bread per day) for 2-4 weeks for the biopsy, and 8-12 weeks for the blood tests. The longer the better. 

 

If you get the blood tests done, these are the ones to ask for:

• tTG IgA and tTG IgG (most common tests)
• DGP IgA and DGP IgG (newer tests which areoften better for diagnosing "early" celiac disease)
• EMA IgA (detects more advanced celiac disease, and is rarely positive if the tTG IgA is negative)
• AGA IgA and AGA IgG (older and less reliable tests)
• total serum IgA (a control  test)

This report has more info on the tsets on pages 8-12: Open Original Shared Link

 

Good luck with whatever you decide to do. 

[FruitEnthusiast]

Another thing to consider is that you don't have to be Celiac to have damage internally and severe symptoms. I'm Non-Celiac Gluten Intolerant, as far as I know, my blood test was negative, and I'm still recovering two years later. If you felt better after removing gluten I would consider that the best test of all.

 

By the way, I had two doctors say my symptoms were "psychosomatic" before I went to one that thought gluten could be the problem. I understand how insulting and frustrating that can be. Sorry it happened to you too. Many of us here have experienced that same thing.