Hi All,

Just thought I'd let you know that I saw my GP today and actually got an appointment with the GI doc for TOMORROW! The funny thing is that as I was telling her about my increasing abdominal symptoms, hair loss, fatigue, weight loss, etc. she mentioned Celiac Disese before I did. She said, "have you ever heard of Celiac Disease? I think you might have it." I was shocked! So, she expedited my referral and I will see the GI doc tomorrow.

Again, thanks for all the helpful advice and information. This is a great forum!

WOW! An appointment tomorrow - that is fast. Be sure to take the celiac info with you to the GI appointment too. Hope the appointment goes well.

Keep us posted.
Anne

Excellent! Try to see that the antigliadin antibodies are included in the testing. Good luck. Keep us posted.

Cara

Thanks, I will. I have a feeling that this GI doc (who I've seen once before) is going to be very helpful in this area because he has a close family member that has Celiac.

I have another question....if the blood tests are positive for Celiac, is it necessary to proceed with the upper endoscopy? My GP seems to think that it is absolutely necessary but I've read a couple of things that lead me to believe that it is optional. Any input on this?

Thanks!

I have run across a couple of people who sufferred for years, when finally they ran into a doctor who did both... and in both of those cases it ended up that they had damage higher up, where the damage isn't supposed to be. Those two people also healed with a gf diet, so there wasn't any mistake.

I'm pretty sure I've seen an abstract or two stating that it is a possibility that should be covered... I'll see if I can dig, at least one of them up.

1: Nat Clin Pract Gastroenterol Hepatol. 2006 Oct;3(10):546-51.Click here to read Links
Endoscopic markers for celiac disease.

* Dickey W.

Department of Gastroenterology, Altnagelvin Hospital, Londonderry BT47 6SB, Northern Ireland, UK. wildickey@aol.com

Celiac disease is common and can present with nonspecific upper gastrointestinal symptoms. Patients may therefore undergo esophagogastroduodenoscopy as their initial investigation. Markers of villous atrophy, which can be seen in the duodenum during endoscopy, are well described. They have limited sensitivity for patients with mild enteropathy and duodenal biopsies should be performed if there is strong suspicion of celiac disease irrespective of endoscopic appearance. Endoscopic markers do, however, allow the selection of patients with nonspecific symptoms for duodenal biopsy, and these markers should, therefore, be looked for routinely during esophagogastroduodenoscopy.

PMID: 17008924 [PubMed - in process]

A positive biopsy is the cornerstone of a celiac disease diagnosis, so most GI doctors will not give you a diagnosis without it. It is considered standard of care.

On the other hand, if there is highly positive bloodwork for anti-endomysial or anti-tTG, some GI's will settle on that. It really depends on the doctor, AND as a patient... you have input, too. Endoscopy w/biopsy is considered a relatively safe procedure, but no procedure is without risk. If you have concerns about the procedure and whether it is necessary, talk to the doctor about it. Nobody can force a procedure on you that you don't agree to. Particularly, if one plans to go on a gluten free diet regardless of the result, you might ask what is to be gained. An endoscopy biopsy can look for other problems that might be co-existing, such as H. pylori, ulcers, etc.

The blood work when positive is fairly conclusive. There are a small number of false positive blood results, but the risk for false negative is much greater. When one is blood work positive/ biopsy negative... the chances are greater that the biopsy was false negative...particularly in someone who is symptomatic and responds to the diet. Generally, if the blood work is positive/ biopsy negative they will suggest a gluten free diet if the patient is symptomatic. They sometimes look at genetic testing in ambiguous cases to see if a patient carries one of the main celiac genes (HLA DQ2 or HLA DQ8). Some doctors will ask you to keep eating gluten for another year to see if you get sicker~ enough to show biopsy damage on the test next time around . I don't think any of us here like that idea!


Again, the bottom line for me is even if the blood tests and biopsy are both negative, a gluten free trial is worthwhile...because so many people who fall short on Celiac Disease diagnostics benefit from the diet. I do believe the blood testing is a good idea. I'm personally neutral on the biopsy, and feel it is a decision best made between patient and doctor depending upon individual circumstance. I believe gluten sensitivity outside of celiac disease matters. Not all doctors agree, but a growing number do .

Cara

Kim & Cara,

Thank you both so much for taking the time to provide me with more helpful information. I'm so glad I started posting here when I did! I have a list of questions that I will be asking him today.

My husband and I were discussing the possibility of this being Celiac or gluten sensitive and it sure would answer alot of questions about my health if it's positive. My GP even said yesterday that she wonders if its maybe even the reason I've had an unexplained white blood count for atleast the past 5-6 years not to mention the very low iron stores among other things.

Oh, speaking of other things.....I wanted to ask if anyone who has gone undiagnosed for a long time ended up having cardiac problems as a result of the malabsorption? I started to have some pretty significant problems about a month ago that they can't explain but had to put me on a low dose beta blocker. I had tachycardia (all the time!), occasional SVT, PVC's (lots!) and a couple of other things that I can't remember right now. Has anyone experienced anything like this?

Thanks again!!

I had those heart symptoms related to B12 deficiency, and it all stopped when I fixed that.

I think those symptoms can be related to iron deficiency, too, but I don't know as much about iron deficiency off the top of my head. Maybe someone else does.

Have we covered B12 deficiency yet? If not~ ask for B12, methylmalonic acid, and homocysteine to be added to the testing... and check out the B12 deficiency page in TGF. [yep...I mentioned this already in the other thread]

I was offered a beta blocker for my PVCs and racing heart, but my doctor presented it in a way that it was optional. It would help with the symptoms, but the symptoms weren't a danger.... just anxiety producing! Some times I thought I was going to die waiting for the next beat, other times I felt like my heart was going to beat right out of my chest. Fast, slow, erratic... a mind of its own for sure. I declined the beta blocker, and it wasn't long after that my B12 deficiency was discovered. I mention this mostly because if you do get a celiac diagnosis, or discover you have other nutritional deficiency and correct it, you may be able to ask your doctor if you can try weaning from the medication rather than stay on it for life (if it isn't needed anymore...not suggesting you do this without consulting your doctor).

Cara

Well, I saw the GI doc today and he agrees that Celiac is a very likely possibility. He had me get some blood work done: Tissue Transglutaminase Antibody, Ferritin level, and TIBC with Serum Iron. He said that if the TTG comes back positive he will want to do an upper endoscopy to confirm the diagnosis (which I expected). It will probably be middle of next week before he gets the results back.

In the meantime, he doesn't want me going GF just yet because of the testing and possible endoscopy. He told me to avoid known triggers and greasy or fatty foods and he also wants me to take Metamucil daily to try and regulate my BM's. If the test comes back negative, he is going to treat it as IBS for a while and see what happens.

This is the hardest part.......waiting!

Thanks for being here....you've all been a big help!