Help Please

[Shaunta]

Here's a little history.

I've had stomach/digestion problems all my life. I had ulcers when I was 8. When I had my son 15 years ago I had severe stomach pain (rivaling child birth, which I had just gone through) paired with terrible rotten-egg burps and follwed by vomiting and liquid stools until I felt like I would be better off dead. This happened until I stopped drinking milk. Throughout my life I've had pale, bulky, foul smelling, sticky bowel movements at least five and up to eight or more times per day.

After my 4-year-old was born, I had a sudden onset of sudden exhaustion and my hair started falling out. When I went to the doctor, he ran some thyroid tests and said not only was I not hypothyroid, I bordered on hyperthyroid (despite weighing 300 pounds and having zero energy) and blamed everything on being fat and postpartum.

It's four years later and about a two months ago the exhaustion which never left suddenly got much worse. I also started noticing a lot of gas, my hair never stopped falling out after I had my baby, and the harder I tried to lose weight the more I gained. I'd gained about 80 pounds in the past four years.

My doctor ran a lot of tests. My cholesterol was low (125), my vitamin D was alarmingly low (15) and I was also low on iron and borderline on vitamin B (I'm not sure which one.) My thyroid again showed to be not only not hypo but close to hyper.

Two weekends ago I was so exhausted (wanting to cry when my alarm went off or my baby woke up, even if I'd had 12 hours of sleep.) My husband bought me a loaf of sourdough bread and all I ate for three days was peanut butter sandwiches. By Monday morning I was in so much pain I could barely get out of bed. My back and legs were hurting enough to cause tears. I was physically ill, pale, itchy, and generally miserable. When I got to work, I googled and read about celiac and stopped eating gluten that day (last Monday.)

Wednesday I woke up with energy. Thursday I made a five hour drive without having to pull over to either use the bathroom or close my eyes because I was so tired I couldn't drive safely. It's a week now, and the weird white/yellow coating that's been on my tongue is gone, my legs and face aren't swollen anymore, my hair has stopped falling out, and despite being on my period and having a cold I have more energy than I've had since I was a kid.

Last Wednesday my doctor ordered some blood tests at my request. I'd been gluten free for two days, and she ordered me to fast before I took the tests. (The tester lady was surpised and said that this test doesn't usually require fasting.)

Here are the results:

Gliadin IgG/IgA Ab Prof, EIA

Deamidated Gliadin Abs, IgA 4.0 U/mL Limit: 0.0 - 10.0

Deamidated Gliadin Abs, IgG 0.9 U/mL Limit: 0.0 - 10.0

Endomysial Antibody IgA

Endomysial Antibody IgA Negative Negative

Can someone help me understand what this means? Does it mean I don't have Celiac? I feel so much better on the diet, I'm not planning on going back to eating gluten. But I'm curious if I can have Celiac with test levels like this. Thank you for any help.

Shaunta

[RiceGuy]

Welcome to the board, and congratulations on figuring out what has been making you sick.

While I'm not an expert on the antibody tests, I do know there are often false negatives. Same with the biopsy. However, if your test results are accurate, I'd have to guess your reaction is not autoimmune, possibly more like an allergy. This may be the difference between gluten intolerance and Celiac, but I don't know for sure. That might also explain your quick recovery. I suppose though, that it may be possibly for an immune system to produce a different antibody than the ones associated with Celiac. Again, I'm no expert on it. If you never actually developed Celiac, I'd say you're quite fortunate indeed.

Either that, or you've made one incredibly fast recovery.

Being self-diagnosed, I never delved into the specifics of the blood tests. I'm sure others will have more insight for you.

[ravenwoodglass]

Welcome to the board. It sounds like your dropping gluten has already made a real difference in how you feel. That is usually a real good indication that you have issues with it. If you want to have a biopsy done you need to get back onto gluten until those tests are done.

I was severely ill and saw a decrease in tummy issues within days, as you did but it took a while for other stuff to improve. I hope you continue to progress smoothly.

We often have some ups and downs at first but you have come to a good place for knowledge and support. Ask any questions you need to.

[Shaunta]

Thanks for your responses

I think my main worry is that this is all in my head. Either somehow I've become a hypochondriac or else I want to feel better so badly that my brain is taking me there regardless of whether my health is actually improving. Like a placebo effect, I guess.

I don't know. I guess I wanted the blood test to tell me exactly what was wrong with me. I do feel better though. I do.

[rinne]

Trust yourself, the tests may be wrong but driving for five hours and having energy again is not psychosomatic.

[CeliBelli]

....

Here are the results:

Gliadin IgG/IgA Ab Prof, EIA

Deamidated Gliadin Abs, IgA 4.0 U/mL Limit: 0.0 - 10.0

Deamidated Gliadin Abs, IgG 0.9 U/mL Limit: 0.0 - 10.0

Endomysial Antibody IgA

Endomysial Antibody IgA Negative Negative

Can someone help me understand what this means? Does it mean I don't have Celiac? I feel so much better on the diet, I'm not planning on going back to eating gluten. But I'm curious if I can have Celiac with test levels like this. Thank you for any help.

Shaunta

Shaunta,

Welcome aboard. I was diagnosed just 15 months ago, and I sympathize with you. Researching celiac disease rapidly becomes a crash course in immunology and genetics. I highly recommend that you ask your doctor for a genetics test, either by Prometheus or Kimball Labs, which are two of the best. There are several very good, in depth essays on genetics testing for celiac disease by Dr. Scot Lewey here:

https://www.celiac.com/authors/45/Dr.-Scot-Lewey

I also recommend you ask your doctor for a referral to a good gastroenterologist with experience treating celiac patients and discuss with them doing an endoscopy to biopsy your small intestine. That is considered the gold standard for diagnosis of celiac disease. You will not want to go completely gluten-free until you have that procedure done, as you will begin to heal rapidly, as you've already learned. Given your extensive medical problems, I urge you to get all of this done as quickly as scheduling allows.

Why go to all this trouble, if just going gluten-free seems to do the trick? Because celiac disease can be serious, even life threatening, and if you do indeed have it, you want the medical proof in hand in the form of official medical diagnosis. You may need this when dealing with doctors and hospitals in the future, since they will not give much credence to someone who is self-diagnosed. The other reason is that if you are celiac, you must follow a very strict gluten-free diet, and this is not easy. It is well worth it if you are celiac; but it may be an unnecessary burden if you are not.

More importantly, if all the testing indicates you are not likely to have celiac disease, you will still want to pursue answers about what you do have, particularly if living gluten-free helps. Gluten may or may not be the culprit, but it may be a clue. Getting these answers brings burdens and responsibility, but it also brings immensely liberating relief, too.

I wish you all the luck finding answers and getting diagnosed. Hang in and persevere. You are worth it.

[mushroom]

I think my main worry is that this is all in my head. Either somehow I've become a hypochondriac .....

Good golly, Ms.Molly. Don't let the doubters get to you. We get enough of that nonsense from our doctors and families without starting to spout it ourselves Only you know how your body reacts to things; you live in it every day.