Question On Endoscopy And Blood Tests

[soverytired]

Hello! I have only recently found this board and it is a treasure trove of information! I will try to be brief and I apologize if I'm not, just need someone to hear me and if you have any thoughts to share I would appreciate it.

Have been feeling really bad off an on for years, diagnosed IBS when it was just becoming popular years ago. Most recently terrible nausea, stomach pain, even worse diarrhea than usual, horrible rashes on each side of my abdomen and along my hairline at the back of my neck, joint pain, swelling feet and lower legs, really just feeling very yucky and not sure I want to go on.

Went to my doctor, ran a series of blood tests some of which showed high liver function problems. Sent me to GI who basically interrogated me and made me feel crazy. One of the things I told him was that my diarrhea problems were often connected to breads and pastas. Dr laughed when I asked if it was possible I was gluten intolerant, he laughed he said because my iron is ok and frankly I've gained about 30 pounds in the last year. He said no way, as I was quite overweight and overweight people are not gluten intolerant. However, he ran more blood tests. When they came back my Iga was 92 with a normal of less 90 and Igg was 90 with a normal of less than 90. He called me and laughed again while he told me the tests were probably false positive as I couldn't have celiac even though the blood tests indicated it. However, he said I could consider an endoscopy which I scheduled. He was going to be traveling so the endoscopy was done by another doctor last week.

When the endoscopy was done nice doctor said everything looked fine and he did take several biopsies. That my "small bowel was very pink to red which is probably the celiac".

What?

I was kindof out of it as anesthesia really upsets my stomach but luckily my husband was there and heard the same thing.

My husband is certain I should not do Gluten-Free unless told by the doctor as they may want to do more tests, but I made it 3 days before trying some as I was curious if I would have symptoms. I had pasta. Very bad gas, very bad diarrhea when I'd had neither in a couple days. The next morning I awoke with the worst migraine I've had in a long long time. So much illness. I'm so tired of feeling sick.

Am waiting for results of the biopsies, but how often do you think there are false positive blood tests? I read somewhere (maybe here) that 39% of people who are gluten intolerant are actually overweight. Has anyone here been diagnosed when they were overweight? What do I do if the biopsies come back negative? My instincts tell me to go off of gluten but I don't know if I can trust myself as I don't feel I'm thinking clearly.

Please share your thoughts on my questions. Thank you for reading this long post! Denise

[MitziG]

Oh ignorant doctors abound!! You can be any weight and have celiac. I was un-dx for 30+ years and was always a tad overweight. When I had my endoscopy the GI was shocked by the visual state of my intestines, he said it was obviously something I had had for years, and he couldn't figure out why I didn't have raging diarrhea.

The fact is that some celiacs are skinny, some are fat and some are just right. The old school of thought was that celiac caused emaciation in children, and that eventually they outgrew it. Unfortunately, many doctors never learned what has become evident over the last 20 years.

Celiac is like Hotel California. Check out any time you like, but you can never leave!

Now, as for your blood test- false positives are extremely rare- basically unheard of. You have celiac disease. Regardless of what the doctors decide.

It is nice to have validation from doctors, but you can't always count on it. Take charge of your own health from here on out.

Spend time looking around here. You will know more than most doctors do about celiac by the end of the first day.

Welcome!

[soverytired]

Oh ignorant doctors abound!! You can be any weight and have celiac. I was un-dx for 30+ years and was always a tad overweight. When I had my endoscopy the GI was shocked by the visual state of my intestines, he said it was obviously something I had had for years, and he couldn't figure out why I didn't have raging diarrhea.

The fact is that some celiacs are skinny, some are fat and some are just right. The old school of thought was that celiac caused emaciation in children, and that eventually they outgrew it. Unfortunately, many doctors never learned what has become evident over the last 20 years.

Celiac is like Hotel California. Check out any time you like, but you can never leave!

Now, as for your blood test- false positives are extremely rare- basically unheard of. You have celiac disease. Regardless of what the doctors decide.

It is nice to have validation from doctors, but you can't always count on it. Take charge of your own health from here on out.

Spend time looking around here. You will know more than most doctors do about celiac by the end of the first day.

Welcome!

Thanks for the welcome and support! It was an interesting experience being laughed at by the doctor then having the blood tests be positive - maybe his second time laughing was actually at himself.

I spent quite a bit of time last night going through the forum and feel much more informed! From what I'm reading the biopsies can be negative and I could still have it. Makes sense as they don't biopsy the entire small colon. I had basically been following a low carb/no white diet when I had the group of fasting blood tests which showed celiac so I'm thinking my numbers could have been higher even if I had been eating normally. Went back on carbs before the biopsy though per the doctor. Guess we'll see if that was enough.

You are right, time to take charge of my own health regardless of biopsy results. My instincts are telling me what I need to do - live gluten free. Thank you again for the support and calm sounding board. I appreciate it!

[Cara in Boston]

I think we need a new acronym for this board. So often I want to reply to posts with : YDIAI (Your doctor is an idiot) because I can hardly believe what I read.

False positives on celiac blood tests are RARE.

You are more likely to be overweight than underweight at the time of celiac diagnosis.

Your endoscopy can be negative and you may still have celiac.

If you have already had the blood tests and the endoscopy, it is time to give the diet a try (I think of it as the "third test") . . . if any of the three are positive, you are likely to have celiac disease (or at least be gluten intolerant) and need to start eating gluten free.

Cara

[Bubba's Mom]

If you tested positive..consider yourself Celiac.

It infuriates me that GI Dr.s..(it's their "feild" of medicine)..can be so clueless about this disease!

Some of us are told we're too old, too black, too Asian, or too over weight to be Celiac, when that isn't a factor here at all.

Read around on the board and see what it takes to be gluten-free. We have a topic here, Celiac 101 that Irish Heart kindly posted for those newly DXed. It's chock full of info that will help you ease into gluten-free much more smoothly.