Possible Celiac?

[lolly]

I've recently begun looking into celiac disease as a possible cause of the seemingly random symptoms that I've experienced for most of my life. I think they fit fairly well, but many of them seem easy to find other explanations for, as they're pretty general or not always present, so I'm hesitant to talk to my doctor about it. It doesn't help that I've read so many stories here about not having understanding doctors.

I do have extended families members diagnosed with celiac though(aunt and cousin), and I understand that the consequences of not treating it can be pretty bad so I wanted to get some feedback on my symptoms to see if it's a good idea to get tested.

-I get diarrhea often and EVERY time I get it it comes with intense pain in my abdomen. The pain doesn't go away until I've passed everything. When I don't have diarrhea I often have constipation. Other times my stomach just seems to get upset for no reason. But I don't experience these all the time.

-Fatigue. I'd say I feel fatigued MOST of the time. I've gotten used to it and feeling tired/lethargic just feels normal now. I also feel generally weak most of the time.

-Muscle cramps/aches. Some days I will get pain in my upper arms or thighs. Sometimes it isn't too bad and I can ignore it, other times it's more severe and distracting. Could never find an explanation for this pain.

-I had iron deficiency anemia as a teenager. I thought this was weird since my diet didn't seem to be lacking iron.

-Also suffered from depression as a teenager and other behavioral problems. Anxiety was a problem, and I've had a few panic attacks. Occasionally I'll still experience brief periods of depression. When I first tried birth control, all 3 pills I tried made me extremely depressed and emotional. When I switched to nuvaring though it was better.

-Recently a blood test showed that I was vitamin D deficient. This could be explained by the fact that I don't go outside often though.

-I've always been somewhat short for my age since I was little, and my younger sister has long outgrown me in every way. Easily coincidence though.

-Another thing I've been for a long time is pale. So white I glow in the sun pale.

-My weight has been healthy, but always bordering on underweight despite all the junk food I eat.

-I also suffer from very painful periods. The pain will get intense and last for hours, making me vomit or just roll on the floor crying. I have to take pain killer around the clock to prevent it.

That's about it I think. Basically I just feel sick/unwell in some way most of the time. My symptoms haven't been very bad lately but they are definitely still there.

Is celiac a possibilty? If I decide to ask my doctor to do the tests, would my insure cover it? If not, how much might I have to pay?

[Jestgar]

It's possible of course. Are you in the US?

[lolly]

Yes, I'm in the US.

[squirmingitch]

Yes, I think it's very possible that you are celiac.

If you decide to get tested YOU MUST continue eating gluten (& I don't mean a tiny bit of gluten) until ALL testing is done including an endoscopy with multiple biopsies.

Here is the current FULL celiac panel. make sure your doctor does the FULL panel.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

[lolly]

Thank you for the advice! I'm still feeling unsure about having it, so I'm considering going gluten free for a month or two to see if my symptoms get better. Would this be alright if I went back to eating gluten at least a month or so before testing?

I'm really hesitant to get it done if it's going to be expensive, so I really want to be more sure before that...

[squirmingitch]

The generally recommended length of time to be back on gluten is 3 months at the rate of 3-4 slices of bread or the equivalent per day before getting tested.

Sure it would be okay for you to try the gluten-free diet before you go back to eating gluten for testing. BUT I will tell you that after going gluten-free MANY people experience much stronger reactions to gluten than before they went gluten free & so then they can't handle going back on gluten for the length of time it takes before getting tested. Just warning you in advance.

Now, having said that. If you don't really care about getting an "official" dx then you don't need anyone's permission to give the gluten-free diet a good try for a good 4 months & I would say give it 6 months. If you find it works for you then you can just stay on the diet.

But in order to give the diet a good try you must be strict in the diet & follow all the rules. This will give you a great start:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Also, know that there is close to a 30% false negative rate for the celiac panel as well as the endoscopy. There are no false positives. But trying to get a GOOD doctor to order the tests is a whole other matter!

[lolly]

Thanks again for your advice! I'm almost ready to commit to gluten free.

Can anyone recommend a book or website with simple guidelines on what is safe to eat? I've looked at the safe/unsafe ingredient list here but it'll be a while before I can keep track of so many names...

[sa1937]

Welcome, Lolly! I think one book you might like to read is Living Gluten-Free for Dummies by Danna Korn.

Another good place to start is our Newbie Info 101. Hope this helps. Browse around the forum as there are many posts with your very concerns. And ask any questions you may have.