I Don't Know What Else To Do...

[Momoffourgirls]

Hello. I am fairly new to all of this and need some guidance. I apologize in advance for the long post, but I really want to give you a complete background of my situation. Here goes:

When my fourth daughter was born, three and a half years ago, I noticed I kept getting cramps high up in the belly for five to six hours at a time.the only thing that helped was laying down for hours. I started to realize that this pain would come on days that I had eaten eggs, in any form, but not things with egg in them. I also started having "attacks" of pain that radiated from upper abdomen, all the way around bottom of rib cage and around the back, up into my neck, jaw, sometimes teeth and ears, too! And my chest and between my shoulder blades. My GI diagnosed gerd and esophagal inflammation, small hiatal hernia and put me on ppis. And for eighteen months I was good. Then it returned, with a vengence! All the while I still could not eat eggs.

During the time on proton pump inhibitor, my appetite was crazy! I was always hungry and I gained weight. I decided it was time to stop, and came off of them. They were no longer stopping my attacks anyway. Lost ten pounds instantly and had my heart checked because of the pain, all was good. Had a sonogram looking for gallbladder stones, none were present. Had a HIDA scan wpthat showed no stones, but it was only operating at 2 percent. Out the gallbladder went and I thought my pain would be gone, too. But no!

Now my problems were at least several times a week. I was exhausted, constantly itchy, scratching caused welter lines and little bumps. Had rash on palms and soles of feet that looked like tiny blisters, weight loss, loud intestines when not hungry, gas and gloating, tons of cramps but all up high, hair loss, distended belly.

No specific foods set of these attacks. The only thing I was sure of were the eggs with the stomach aches...which to me were two different symptoms and totally different.

I had come down with what doc called infectious colitis this past july, too.

Now doc says IBS but I cant accept this. My primary doc gave sent me for antiendomysial celiac test which was negative. I went gluten free anyway and within days I felt a lot better. Rash gone, itchy rectum gone, loud intestines almost gone, gas more controllable ( trapped gas, hardly ever expels), more energy and weight loss.

Went to GI again to tell him and he said my previous endoscopy and colonoscopy did not show celiac and neither did biopsies. But he wasn't completely convinced. So he ran a celiac panel, along with other tests, to see. Results are ready but he is not in office till tomorrow and MA will not tell me the results. She said doc has to sign off on it but that she "doesn't see anything too crazy". What does that mean?

Do you think i sound like a celiac? I have no family history that I am aware of. We do have GI problems but no knowledge of actual celiac.

I was almost completely gluten-free for two weeks pre celiac panel. I have since reintroduced it to see the results. Gas is back, had another attack, nausea, itchiness, loud intestines....all within two to four days after reintroduction.

If negative, could instill have a sensitivity to gluten? How can I know for sure? Will the tests show this as well?

Again, so sorry fir the long post, but it's killing me here! And ihave four girls that I have to worry about as well.

Thank you in advance for any info you can give!

[GlutenFreeManna]

Yes, if it's negative you can still be gluten intolerant. Currently, the only test for gluten intolerance is exactly what your did--remove gluten and see how you feel, try eating gluten and see if the symptoms return. Your symptoms returned. No matter what the test results say you should listen to what your body is telling you. Since you were gluten-free for testing, then your result could also be false negative and you may actually have celiac. Regardless of what the dr tells you, you should get a copy of those results to see for yourself. Sometimes dr's will call a "low positive" negative. If that's the case it's even bigger evidence that you have gluten intolerance or celiac.

[Jnkmp8]

Hi,

Gee your history sounds so much like mine. I eventually went gluten free because I believed it to be right for my body-- since then my intolerance for eggs has disappeared-- turned out if I ate egg I'd generally have bread with it!!! My GP (uk doctor) has finally started taking me seriously due to my inability to even touch gluten ie bread, flour , creams etc as I bluster from my mouth to my toes!

Keep fighting the drs--BUT do what you think is right for you.

It sounds very much like celiac/gluten allergy. Blisters--- poss DH seek a dermatologist for if you can get that diagnosed celiacs will be diganosed as part of tge course as you don't get DH without celiacs.see other posts.

You are bot alone and please let us know how you get on.

I have my der

Dermatologist nxt wk & gastro guy nxt month.

Good luck

Xx