Can Someone Please Help Me?

[pugluver31902]

Hi all! Hope you are all doing well this holiday season. I was hoping someone could shed some light on a situation for me.

Last year I was refered to a gastro doctor for severe stomach acid. The gastro doctor ran some blood work which came back posotive for celiac disease. I was then followed up with an endoscopy. The doctor said he didn't see anything to bad but we would have to wait for the results of the biopsy. The biopsy came back positive and I was diagnosed with Celiac. I have NEVER had any of the symptoms listed as classic celiac symptoms. Never any diarreah, stomach cramps, or anything else. No neuropathy, fatigue, headaches, anything. I could eat an entire carb lunch and feel just fine. But anyways I accepted the diagnosis and went completely gluten free. I NEVER cheat and am a stickler for label reading and very careful about cross contamination. But here we are a year later and I feel exactly the same. My stomach acid problem is exactly the same as before. I had a follow up endoscopy and the doctor said he saw scarring and pitting in the exact same places, no better no worse. My blood test was negative this time, but that was expected as I have been gluten free for a year. I have been tested for other food intolerances as well.

So my question is, is it possible to get a false positive? First blood test positive and a biospy that the doctor said was positive, but it was borderline, without a positive blood test the biopsy could have been interpreted as negative.

Second blood test after gluten free diet negative, biopsy results unchanged. No change in stomach acid. Doctor said biopsy was unusual as it had not worsened, but no healing had occured, but may indicated refractory celiac disease.

Anyone?

[happygirl]

If you had positive bloodwork and a positive biopsy, then you have Celiac. The biopsy is specific for Celiac.

Many Celiacs are "silent Celiacs"---in fact, many experts think that what "we" consider "classic Celiac" (many of the symptoms you describe) are actually in the minority.

Dr. Peter Green (www.celiacdiseasecenter.columbia.edu) says

"The vast majority of individuals with celiac disease have little in the way of gastrointestinal symptoms"

"Some patients with celiac disease are truly asymptomatic"

"The majority of individuals with celiac disease are considered to have the silent form."

You may have other problems, one of which may be refractory Celiac. Also, it may take longer for some individuals to fully heal (a few years). You may have a non-Celiac condition on top of your Celiac that is causing other problems.

If you have the potential for refractory sprue, I would look into a Celiac specialist.

It may be worth it to get copies of your bloodwork (both times) and the results of your biopsy. Post your bloodwork results (including the name of the test, the result, and the reference range) and what the biopsy report indicated.

[CarlaB]

If you had positive bloodwork and a positive biopsy, then you have Celiac. The biopsy is specific for Celiac.

Many Celiacs are "silent Celiacs"---in fact, many experts think that what "we" consider "classic Celiac" (many of the symptoms you describe) are actually in the minority.

Dr. Peter Green (www.celiacdiseasecenter.columbia.edu) says

"The vast majority of individuals with celiac disease have little in the way of gastrointestinal symptoms"

"Some patients with celiac disease are truly asymptomatic"

"The majority of individuals with celiac disease are considered to have the silent form."

You may have other problems, one of which may be refractory Celiac. Also, it may take longer for some individuals to fully heal (a few years). You may have a non-Celiac condition on top of your Celiac that is causing other problems.

If you have the potential for refractory sprue, I would look into a Celiac specialist.

It may be worth it to get copies of your bloodwork (both times) and the results of your biopsy. Post your bloodwork results (including the name of the test, the result, and the reference range) and what the biopsy report indicated.

Ditto what she said.

[pugluver31902]

Wow, that was an amazingly quick reply! Thank you so much.

When I was first diagnosed, my bloodwork results were as follows:

Tissue Transglutaminase Antibody IGA <5 negative >8 positive RESULTS 10

Gliadin Antibody <11 negative >17 posotive RESULTS 28

Endomysial antibody SCR POSITIVE

I dont know a lot about bloodwork, but I can read enough to know the results were positive. As for the biopsy results, I will just quote what the surgical pathology report noted in the last sentence.

"In the appropriate clinical setting, a gluten sensitive eneropathy would be a consideration. Clinical correlation needed"

That makes me feel as though what the tech was saying was the biopsy was borderline. It would not have been positive if the bloodwork did not support it. But the bloodwork can't be a false positive right?

P.S. I should probably add that the bloodwork was done two weeks after I had major surgery. That always makes me wonder if my levels were just screwed up bc I got a staph infection after the surgery. Lol. Im a hopeless medical case!

[happygirl]

You have a positive EMA, tTG, and AGA (not sure if its IgA or IgG). Thats pretty darn positive to me. I don't believe it cross reacts with other things, especially not all three. The EMA and tTG are both good tests, so the fact that they correlate, to me, supports it even more.

Is that the wording from the person who did the procedure or is that from the biopsy report itself? How many biopsies were taken?

[pugluver31902]

That was a direct quote from the biopsy results. Several biopsy's were taken the first time. I did have a follow up biopsy, I just can't seem to find the report right now. I know the doctor said the results were pretty much identical to the first time. He wants to wait six months to a year and then do another endoscopy before he diagnosis me with refractory celiac. My bloodwork was negative the second time, but I had been on a gluten free diet for six months.

[ravenwoodglass]

That was a direct quote from the biopsy results. Several biopsy's were taken the first time. I did have a follow up biopsy, I just can't seem to find the report right now. I know the doctor said the results were pretty much identical to the first time. He wants to wait six months to a year and then do another endoscopy before he diagnosis me with refractory celiac. My bloodwork was negative the second time, but I had been on a gluten free diet for six months.

The fact that your blood levels had gone down is a good thing. The fact that your follow up biopsy showed that you haven't progressed very far in healing makes me wonder if perhaps you are still getting small inadvertant amounts of gluten. I know you say you are really careful abuot CC but have you eliminated all non food sources, checked all meds (what do you take for stomach pain? Many OTC and script meds are not safe), toiletries etc?

Another thing to consider is that you may be sensitive to something other than gluten, have your ruled out soy and dairy?

It sounds like you have a pretty good doctor and I hope you start to feel better soon.

[pugluver31902]

I really don't think I am getting glutened, but I dont have reactions so I guess its always a possibility. I only buy my food from a health food store, the gluten free products. I dont eat out. I have checked EVERY toiletry from toothpaste, to lipstick, to shampoo, to handsoap. Called all the manufactures of every medication and chapstick company. I got a new toaster and cutting boards, and I don't eat at other peoples house. I even use gloves to feed the dog and make sure he doesnt lick me. DH is gluten free too, so that I dont get cross contamination when he kisses me (Im pregnant and going crazy that I will gluten and kill the baby) Lol.

[Rachel--24]

I agree with the previous posts. It doesnt seem that there is any question as to whether or not you have Celiac. As Happygirl said the EMA and tTG are both very specific tests.

It could very well be that you are asymptomatic with regards to Celiac but the symtoms which led you to be tested may be caused by something else.....which is why they havent resolved.

You might want to consider eliminating dairy and soy for a period of time to see if there is any improvement. Food intolerance testing is not known to be 100% reliable...the best way to test these foods is to eliminate them and then challenge them later on.

[Darn210]

Hi pugluver . . .

You responded to my thread (Acid still a problem) so you know my daughter's story. The stories really do sound similar. There are times that I think they must be wrong about the Celiac Disease. Her one and only symptom is STILL there and hmmmm, could the stomach virus prior to her blood test mess up the blood test?

Perhaps your biopsy hasn't changed because your stomach acid issue has changed. You know that I don't have any answers, yet. If we come across something that is beneficial to our case and I think it might help you, I'll pass it along. I hope you will do likewise.

(Lots of pugs on my husbands side of the family )

[pugluver31902]

Hi pugluver . . .

You responded to my thread (Acid still a problem) so you know my daughter's story. The stories really do sound similar. There are times that I think they must be wrong about the Celiac Disease. Her one and only symptom is STILL there and hmmmm, could the stomach virus prior to her blood test mess up the blood test?

Perhaps your biopsy hasn't changed because your stomach acid issue has changed. You know that I don't have any answers, yet. If we come across something that is beneficial to our case and I think it might help you, I'll pass it along. I hope you will do likewise.

(Lots of pugs on my husbands side of the family )

Good luck to you and your daughter! I as well will pass along anything that I find of interest. I sure wish I knew!

Thank you everyone for helping me. I guess I really have always believed the test results, which is why I have strictly followed the diet, Im just frustrated that my ONLY symptom has not resolved. I am thankful that I did not have to suffer for years with cramps and other problems, but at the same time, sometimes it feels extra hard to be strict since I know that even if I did cheat, I would feel fine. I sometimes wonder if it would be easier to get sick from gluten so that maybe I would have some adversion to it. But, I guess everyone always thinks the grass is greener on the other side! Thank you for your help everyone. And for letting me vent!

[Darn210]

Perhaps your biopsy hasn't changed because your stomach acid issue has changed.

AAACCCCCKKKKK! Just noticed my typo . . . or rather my lack of typing?

Should have read:

Perhaps your biopsy hasn't changed because your stomach acid issue has NOT changed.

Just curious, do they have you on medication for your stomach acid? If so, are your symptoms breaking through?

[pugluver31902]

Yes I am on prevacid which worked for a while, and now does not work so great anymore. I thought maybe it wasnt working at all, so I stopped taking it and that was a disaster. So I am back on it and while it definitly controls the acid, it doesnt prevent it. I also take a zantac every morning and usually a few doses of mylanta through out the day. The mylanta works really well if you are looking for anything in an "emergancy" acid break through. Plus, now I am 13 weeks pregnant so Im getting even more acid. Yuck.

[hayley3]

When you say acid or you talking about reflux symptoms or something else?

[pugluver31902]

Im not sure if I could call it reflux, bc it doesnt come up my throat. I dont get reflux symtoms such as heartburn. It stays in my stomach feeling as if I have swallowed matches, like a scalding burning feeling, then I start to get nausea, then that leads to vomiting what feels like bleach. It just burns and scalds my throat and mouth. Its definitly stomach acid, it just doesnt "come up" my stomach until I am actually throwing up.

[hayley3]

I don't get heartburn either. I just get a nasty taste in the back of my throat like a bad burp and it's normally when I bend over. It started when I was pregnant and then went away for a loooong time. Do you drink coffee?

[pugluver31902]

No, I dont drink coffee. I cant taste the acid either. It doesnt even come up if I burp. It started when I was in highschool. I must have a really tight, um..., whatever that muscle is in your throat that keeps your food down. Lol, cuz it never comes up until I throw up.

[Darn210]

When you throw up, is it just a mouthful (like my daughter) or are you emptying your stomach? (I'm still comparing/contasting your case to my daughter's).

[pugluver31902]

It depends. If I havent eaten, its just probably a mouthful maybe a little more but not much, and its like pure stomach acid. Looks like water and spit. But I usually have 3-4 dry heaves after that. My body really wants to make sure its out. But...sometimes if I feel the stomach acid building up, I will try to eat something to absorb it. If that doesnt work, I usually throw up as if Im emptying my stomach. I think my tummy is just to irritated at that point.

I have found that trying to eat when I feel it does not really work. A good swig of mylanta is usually a 50/50 shot. Sometimes I feel better, other times I still throw up, but at least it doesnt scald my throat, mouth, and nose. F.Y.I. The company will only verify that the original flavor of mylanta is gluten free.