Celiac - Positive Biopsy, Negative Blood Test, Acid Reflux Complications

[MonarchX]

When I was little (5-8 years old), I had one case of severe gastritis-like episode that lasted good 3-4 weeks and caused stomach pain all day long, worse at night, but gone when I was asleep. They never found out what it was, but it passed.

Fast-forward to today - I am 22, 204lbs, 6'2 semi-athletic. Even as a kid I had mild hunger pains in my upper stomach when I was hungry. During ages 20-22 it intensified to a point where I had to eat 5-6 times per day. Once I overate on cakes and next day it was horrible - nausea, severe indigestion and diarhea. I saw the tummy doc and had an endoscopy, which ruled out ulcers and gastritis. Pathologist was 101% certain I was a celiac. Blood test came back negative. The complication is that my celiac symptoms are so closely associated with acid reflux it drives me crazy! My theory is that when I eat gluten and damage my tummy - the food is not properly digested and the body gets hungry again and fast, which causes acid to be released and I get my hunger pains. In addition, gluten probobly damages esophagus and stomach lining and even tiny acid amount can cause pain - what do you think of my theory? I do not have any other issues, but hunger pains. They come on fast, making me sweat and sometimes nearly vomit. After several gluten experiments I realized I am 100000% celiac (I tested myself since blood test was negative). I am OK with an occasional, accidental, small gluten in-take. However, eating pizza for 3 days and OMFG...

So, can acid reflux be worse due to being a celiac? Anti-acids barely help with hunger-pains if I eat gluten. Also, ibuprofen, apsirin, and naproxen make the issue worse.

I also have trigger points (not fibromyalgia), which is often associated with vitamin D deficiency and calcium deficiency.

Are there any specific foods or supplements I should take that are specific to my symptoms/issues? I take Ortho Core multi vitamin (very bio-avaiable formulations, contains chromium), fish oil, 500mg/30mg magnesium/zinc before bed, Prevacid, Pepto Bismol (if indigestion occurs), Gaviscon (can quickly termine upcoming hunger pain).

[sandsurfgirl]

Celiac can affect everything, not just GI stuff. People get muscle pain, joint pain, headaches, allergies and asthma, anxiety attacks. Since it's autoimmune and your body is attacking itself it wreaks havoc.

Another poster on here just gave me a book about how GERD symptoms can be caused by not enough acid as well.

Testing is notoriously inaccurate so positive biopsy is plenty to confirm. Even positive dietary response is good.

You can NOT cheat even if it doesnt' cause you symptoms. Celiac is an autoimmune disease. Your body is DESTROYING itself EVERY time you eat a tiny bit of gluten. Don't do it.

Ummm, "OMFG", specifically the F part is well... maybe not so nice for people who tend to like God.

[MonarchX]

Celiac can affect everything, not just GI stuff. People get muscle pain, joint pain, headaches, allergies and asthma, anxiety attacks. Since it's autoimmune and your body is attacking itself it wreaks havoc.

Another poster on here just gave me a book about how GERD symptoms can be caused by not enough acid as well.

Testing is notoriously inaccurate so positive biopsy is plenty to confirm. Even positive dietary response is good.

You can NOT cheat even if it doesnt' cause you symptoms. Celiac is an autoimmune disease. Your body is DESTROYING itself EVERY time you eat a tiny bit of gluten. Don't do it.

Ummm, "OMFG", specifically the F part is well... maybe not so nice for people who tend to like God.

Thanks! Is there any way to find out whether my damage cannot be reversed ? Do intenstinal villi regenerate or die permanently? I've been eating bread for good 18 years of my life. I wonder just how much damage was done during that time... I wonder what other things to expect? I am also reading that shampoos and skin products can have gluten in them too?

I may have mis-understood this disease. I thought it only damages instinal villi, lowering food absorption. However, my symptoms are in the stomach, not intestine.

[Brien]

From what I can see by all the varied effects that celiac or wheat allergies can do, it is a person to person thing that makes one feel good. I can tell you that when I quit all coffee and tea's that it helped tremendously with my overall health and I felt a whole lot better - like I had my old self back.

Currently I'm ingesting wheat products every other day because I'm having bloodwork done to determine if mine is an intolerance or celiac's. I woke up at just after 5 this morning with the jitters and anxiety. By late morning they had subsided. I might get another one or not before the day is out. But just two more weeks to go..,

[sandsurfgirl]

Generally the villi heal. You are so young, I would think complete healing would be possible for you. You just have to be diligent.

The thing about shampoos and stuff is that it ends up in your mouth when it runs down your face in the shower or it's on your hands when you eat, etc. I resisted switching but when I finally did, it made a difference.

Most of us have issues that feel like they are stomache related. I dont' think docs know exactly how it all works. It's all interrelated and when your immune system is going haywire it affects everything.

[MonarchX]

Generally the villi heal. You are so young, I would think complete healing would be possible for you. You just have to be diligent.

The thing about shampoos and stuff is that it ends up in your mouth when it runs down your face in the shower or it's on your hands when you eat, etc. I resisted switching but when I finally did, it made a difference.

Most of us have issues that feel like they are stomache related. I dont' think docs know exactly how it all works. It's all interrelated and when your immune system is going haywire it affects everything.

I didn't know shampoos had gluten. I use Head & Shoulders Anti-Dandruff (no conditioner).

[passionfruit877]

So, can acid reflux be worse due to being a celiac? Anti-acids barely help with hunger-pains if I eat gluten. Also, ibuprofen, apsirin, and naproxen make the issue worse.

I was just gonna say that I love spicy food and eat it all the time no problem, but when I get glutened I get terrible heartburn. I used to always have heartburn but when I went gluten free I guess it stopped. Also, I've had stomach ulcers since I was 14, and if I take too much ibuoprofen I get one.

So my point is don't think gluten can't affect things like acid because for me I think it does.

[Bobbijo6681]

I was just gonna say that I love spicy food and eat it all the time no problem, but when I get glutened I get terrible heartburn. I used to always have heartburn but when I went gluten free I guess it stopped. Also, I've had stomach ulcers since I was 14, and if I take too much ibuoprofen I get one.

So my point is don't think gluten can't affect things like acid because for me I think it does.

This is very interesting to me because when they did the biopsy for Celiac I was also diagnosed with GERD, however have never felt like I had Acid Reflux. Dr asked if I ever had heart burn and as far as I know I never have. I have been told I would know if I had it, so I have to assume that I have not. As far as the Acid Reflux, I do not ever feel like I have any problems with that either...so some "Acid Reflux" damage caused by Celiac? I guess that isn't out of the question.