Do I Have Celiac?

[cyberprof]

Long story.

I have felt bad for about two years but chalked my symptoms up to 1) Stress 2) Peri-Menopause 3) Being overweight (BMI 28). Had test for ovarian cancer, thyroid. Both negative.

Got bad stomach pain in November and December. Got the worst case of stomach flu ever and went to doc. I thought I had a stomach or esophageal ulcer and doc agreed, set up an endoscopy. Endoscopy was clear for ulcer and gastritis. But they took biopsies and didn't tell me why.

So the doc called and said "inflammation" and "white blood cells" and "celiac sprue". Wow, was I surprised. Said eliminate wheat, have blood test "full celiac panel", come back next week and then see a dietician. But now that I read the forum, I don't know if I have "flattened villi"...??

I eliminated flour and in 48 hours I feel like a new person. All the symptoms make sense. Low energy, D, stomach pains after eating (not severe, but enough), bloated feeling after eating, loss of concentration, fuzzy thinking (I used to have an awesome memory, losing it-- thought it was age), bad gas and burping. I never considered celiac, as I thought you had to be malnourished/skinny. I've had arthritis since I was 20 but all my joints have hurt and I feel like I've been run over by a truck most mornings. Joints are really improved in 3 days.

So, my questions so I know what to ask the doc:

Do I have celiac for sure?

Do I have damage or am I just at an "inflammation" stage"?

Why take a blood test? Is that just to see what my levels are for future reference?

And, to slightly change the subject, what is "tooth discoloration"? And how likely is it that my kids have it? The reason I ask is that my 13yo son has discolored teeth and is not as "robust" as I would like, so I've set up an appointment for him to have a blood test.

Thanks in advance. This is a great forum.

[Rachel--24]

Welcome to the board.

Since you've had your biopsy first and it was positive....you really dont *need* bloodtests to confirm Celiac. In order for bloodtests to be accurate you need to be consuming gluten all the way through testing....this applies to the biopsy as well.

Your Dr. shouldnt have told you to go on the diet and then come back for bloodtests. The tests may be false negative since you've already begun the diet.

It really does not matter the results of the bloodtest at this point (unless using them for reference point).

There is no such thing as a "false positive" with the biopsy....the positive response to the gluten-free diet is confirmation that the correct diagnosis has been made.

If the biopsy is positive....this means that you have damage to the villi.

I would ask the Dr. to explain this....Was there actual villi damage? Did you have a positive biopsy for celiac disease or did he see something that is making him "suspect" celiac disease??

I'm assuming with the postive results you've gotten from the diet that you do have Celiac Disease. I would not rely on bloodtests for confirmation of this since you've already started the diet.

[cyberprof]

  Rachel--24 said:

Welcome to the board.

Since you've had your biopsy first and it was positive....you really dont *need* bloodtests to confirm Celiac. In order for bloodtests to be accurate you need to be consuming gluten all the way through testing....this applies to the biopsy as well.

Your Dr. shouldnt have told you to go on the diet and then come back for bloodtests. The tests may be false negative since you've already begun the diet.

It really does not matter the results of the bloodtest at this point (unless using them for reference point).

There is no such thing as a "false positive" with the biopsy....the positive response to the gluten-free diet is confirmation that the correct diagnosis has been made.

If the biopsy is positive....this means that you have damage to the villi.

I would ask the Dr. to explain this....Was there actual villi damage? Did you have a positive biopsy for celiac disease or did he see something that is making him "suspect" celiac disease??

I'm assuming with the postive results you've gotten from the diet that you do have Celiac Disease. I would not rely on bloodtests for confirmation of this since you've already started the diet.

I guess I should have said that I got the blood test when I was still eating gluten. I stopped the same day, after the blood test.

Thanks for the response.

Any idea about tooth discoloration? What does it look like?

[Rachel--24]

  cyberprof said:

I guess I should have said that I got the blood test when I was still eating gluten. I stopped the same day, after the blood test.

Thanks for the response.

Any idea about tooth discoloration? What does it look like?

Oh...ok...I'm glad the bloodwork has already been taken care of.....that is good news!

As far as the tooth discoloration...I've seen it discussed here many times. My suggestion would be to start another thread specifically about tooth discoloration....you may get more responses that way.

Sorry, I cant help much with that one.

[gfp]

  Rachel--24 said:

Welcome to the board.

Since you've had your biopsy first and it was positive....you really dont *need* bloodtests to confirm Celiac. In order for bloodtests to be accurate you need to be consuming gluten all the way through testing....this applies to the biopsy as well.

While this is perfectly true presently we never know what the future will bring as pertains to treatments and stuff...

Because of the *need* to go back on a gluten diet to be tested this could mean if some new stuff does come to light the more diverse your tests both positive and negative (so long as they are valid) is probably better than having to go through a gluten challenge later?

Who knows what the future will bring but I guess it doesn't hurt to be optimistic and think some positive stuff could happen ?

  Quote

Your Dr. shouldnt have told you to go on the diet and then come back for bloodtests. The tests may be false negative since you've already begun the diet.

Yeah this is a bit stupid IMHO... quite why the couldn't have drawn the blood at the same time as the bioposy etc. then at least you can go gluten-free and start feeling better ASAP and not miss out any tests.... its water under the bridge though now and your descision is whether to go for tests in the hope they mighty actuallly be useful to you later on or not?

Some things to consider are for instance having a baby... (whether this applies to cyberprof) and noone seems to be able to decide on transferring gluten antibodies to a baby but what we do know is IgG is transferred via the placenta whereas IgA is transferred in breast milk...

So its possible that at some point people might be advised differently if they have only one raised antibody?