Discouraged And Needing Your Advice...

[herbgirl]

I feel like I really need some good advice right now and I have a feeling y'all might have some for me. Sorry if this gets long, but I'd like to give you a little background.

 

I'm twenty and since I was about sixteen or seventeen I've wondered if the way I feel is normal. First of all it was basically fatigue. Not all the time, but often enough for me to wonder what was "taking" my energy. Then the gut problems started... so slowly that at first I barely noticed. Now they're definitely worse (an ache that starts right after eating about 50% of the time and can last 4-5 hours, with bloating and sometimes gas). I'm pretty much normal weight, though I have to work hard to lose or even to maintain my weight. A lot of muscle aches and brain fog / "low blood sugar" feeling (I don't know what to say about this... I've seen a few low numbers but they don't always line up with the times I feel spaced out, like I can't think or concentrate or have the energy to work). 

 

Then about two months ago I read up on celiac and gluten intolerance a good bit and was surprised how many of these and other symptoms could be related. A friend that has celiac recommended a one-month gluten-free trial to see how I felt (I know, I know... wrong move, but she had neg. blood tests and so didn't trust them either). So I did gluten-free for one month. Strictly gluten-free. I'm sure I had a few CC's (the Subway where I was too shy to make them change gloves to do my salad...), but I was pretty careful. To my disappointment I didn't feel much difference. My belly kept on aching... but I did get some relief from brain fog, my eyes weren't puffy anymore and I thought just maybe I wasn't as tired. Fast forward to end of month. I went back on gluten and felt fine the first day or so. Then I got tired. And extremely achy. Puffy eyes again. I gained weight and am struggling with food cravings I can never seem to satisfy even if I know I will feel sick (I had this before my month gluten-free, but it seemed more in control then...). 

 

So I decided I want some indication if it's gluten or not... mostly so I could explain to friends and family. I knew I had to be eating gluten to do testing. About two weeks into eating gluten every day, I had an appointment with my endocrinologist (I have Grave's since a few years ago, though my blood work shows normal levels now. I know autoimmune diseases can go hand in hand which is another reason I suspect celiac.) and I asked about the Grave's/celiac connection. He acknowledged they're connected and gave me an order for a celiac panel. I told him I was gluten-free for a month and asked if it mattered. He said if I still have symptoms, I should still have antibodies. That test was two weeks ago... Now I have my results and I'm rather frustrated and discouraged. They only ran two tests and they both show normal. 

 

IMMUNOGLBULIN A - 204     Ref Range -  88-410

 

tTG IgA AUTOAb - 5             Ref Range -   <20

 

So should I pursue possible celiac more? Do more tests? Does this totally rule it out or could my gluten-free month mess with the tests? Does it even sound like celiac?! I will be glad for anything you can do to help me sort this out. Thanks!

[nvsmom]

It could be celiac disease. Because you already have one autoimmune disease you are more likely to get celiac disease than other people. Testing is a good idea.

Your doctor is wrong. Celiacs with symptoms do not necessarily have positive celiac tests. There are celiacs out there who had positive biopsies but never had a positive blood test. It happens. The tTG IgA test you had done only catches 75-95% of all celiacs; that's not a bad sensitivity but it misses up to a quarter of all celiacs.

It would be a good idea to get more tests done. Ask for the tTG IgG, DGP IgA, DGP IgG, and possibly the older and less reliable AGA IgA and AGA IgG. You could also get the endoscopic biopsy done. Be sure to eat gluten in the 2-3 months prior to getting the blood tests done or being gluten-free could affect the results.

Good luck!

[herbgirl]

Thanks!

 

 I really do want to get those tests you suggested. I know celiac disease could be a pain to work around. But I wish so badly I could get a positive test of some kind that I don't exactly care. I'm willing to change my eating.  I'm just tired of feeling sick and not knowing why. Almost any answer would be a relief right now! (If only I didn't have to eat gluten for at least a whole month yet... I'm almost starting to hate the stuff!)

 

It's really good to know there are other folks out there who understand the not-feeling-good and testing frustrations! 

[RMJ]

Edited: Oops, I meant to post this in a different thread. Sorry if it is not relevant here.

I used to develop tests for antibodies. They are not perfect. Run the same sample twice and the numerical results will be off by a bit. If a different person runs the test, or it is run on a different day, the results will be further off. I looked at information on the FDA website for one manufacturer of celiac DGP tests. When two different tests manufactured by the same company were compared, 217 out of 228 samples gave the same result (both positive or both negative). So 11 of 228 samples were positive on one test and negative on the other.

[nvsmom]

I think most people around here have experienced testing frustration on top of the frustration of not knowing how to make ourselves feel better... You are definitely in the right place.  

[herbgirl]

Wow, that's interesting info about the antibodies tests! I guess no test is perfect... Too bad!

 

Thanks for the understanding, Nicole! That in itself helps a lot.

[nvsmom]

If you need back-up, this report (especially pages 10-12) has some good info on testing:   Open Original Shared Link

[1desperateladysaved]

I felt that way for years ready to do anything to get rid of the spaced out, foggy mind, and fatigue at any price.  I found it!  I hope you will too.

 

Dee

[herbgirl]

That's a great link. And it reminded me of one thing I've been thinking about... If I do find out that I have celiac disease, does that mean my family should all be tested? Or maybe just if they have celiac-type symptoms? But of course you can have silent celiac, too. My mom is the one I would worry about the most. She doesn't have gut issues like I do, but she does have the Grave's. She also has low energy, even though her thyroid numbers are all in line currently. No major aches (just the normal ones from being a hard-working mom) or brain fog, but I still wonder, especially because of the AI disease. I know this is all getting the cart before the horse... I may not even have celiac myself. Just thinking awhile.

 

@ Dee... I hope so too! But sometimes it seems almost too good to hope for and then I wonder if this is just the way I am. But at the same time I know it's not normal to be this exhausted all the time. I hope and pray for an answer soon!

 

A good afternoon to all of you.

[nvsmom]

That's a great link. And it reminded me of one thing I've been thinking about... If I do find out that I have celiac disease, does that mean my family should all be tested? Or maybe just if they have celiac-type symptoms? But of course you can have silent celiac, too.

 

Oh yes, get them all tested, even if they have no symptoms.  They say the chances of the immediate family getting celiac disease is 1/10 but it seems higher in some families.

 

And remember, celiac disease can appear at any time so if they continue to eat gluten they should be retested every two years or as soon as suspicious symptoms appear.... They'll need to do that for life if they are eating gluten.

[herbgirl]

Wow, that would be a lot of tests! I can see it would be worth it though for the 1 in 10 it happened to catch.