Don't Know If I Should Go Gluten-free .. Mixed Test Results

[kristionii]

Hello,

My journey started in May 2008 when my GI doctor gave me a transglutamine blood test as an afterthought to rule out gluten issues (he thought I have plain and simple IBS). He was shocked, as my blood test came out VERY positive. He said it was an unusually high number. He scheduled an endoscopy and told me to eat normal and get used to the idea that I will probably be on a gluten-free diet for life once I got the endoscopy results. In July 2008 I had the endoscopy and found out that it was inconclusive. He advised me to eat normal and enjoy all foods and get another blood test in a year. This past month, I had another transglutamine blood test, and it was normal (he said the numbers were getting close to the "borderline" range). Needless to say I'm so confused!!! He told me to just keep eating normal food, and not go gluten-free.

I went to my allergist to get my annual allergy testing, and on top of the usual seasonal suspects (ragweed, grass, etc), he found an allergy to oats, barley and rye, and highly allergic to flaxseed. His advice was to get off gluten completely. He also does a full-range of blood tests and everything is normal, but he found an autoimmune reaction of some sort, which he suspects is arthritis.

I really don't know what to do. My GI doctor said not to go off gluten, my allergist does, and my mom worries going off gluten will be "bad" for me.

I'm 27 years old, female, with an aunt who is positively diagnosed as celiac. My GI symptoms have gotten less severe over the last year, but have included, diaherria, constipation, bloating, and big weight fluctuations (up and down). I also have skin rashes of unknown origin, and am usually exhausted. My allergist said my skin pallor is pale and the dark circles under my eyes tell him my body isn't as healthy as it should be.

Anyhow, I have an appointment with my family doctor next week for a nutritionist referral if I decide I want to go gluten-free. Just looking for some opinions from people who have "been there before." The negative AND positive blood test, and inconclusive biopsy is what has really confused me.

Thank you, it is greatly appreciated it.

K

[ravenwoodglass]

I would go with the allergists advice and give the diet a try.

[lovegrov]

You should try it. And do it with passion -- no cheating. If your issues improve, you have your answer. Improvement on the gluten-free diet is the ultimate diagnostic.

richard

[Serversymptoms]

At least you will have other test done etc.... I went on a gluten free diet myself, seen improvements in symptoms and within 2 weeks of the diet I got a celiac test done which came back negative... wasn't surprise due to my diet. Being 17 years old, I'm not being held as only my imagenation, want attention etc... while I countinuely have other symptoms which I think is due to thyroid issues and it needs to be checked out.

I would suggest for you to go on the diet, I don't see how it can hurt.

[gfb1]

Hello,

My journey started in May 2008 when my GI doctor gave me a transglutamine blood test as an afterthought to rule out gluten issues (he thought I have plain and simple IBS). He was shocked, as my blood test came out VERY positive. He said it was an unusually high number.

by your description you did not have the entire celiac panel. if that is the case your high TTG is suspicious. if your doc didn't 'believe' the test -- he should have redone the test.

He scheduled an endoscopy and told me to eat normal and get used to the idea that I will probably be on a gluten-free diet for life once I got the endoscopy results. In July 2008 I had the endoscopy and found out that it was inconclusive. He advised me to eat normal and enjoy all foods and get another blood test in a year. This past month, I had another transglutamine blood test, and it was normal (he said the numbers were getting close to the "borderline" range). Needless to say I'm so confused!!! He told me to just keep eating normal food, and not go gluten-free.

imho, not very good advice. endoscopies "can" be inconclusive -- but, i also note that you did not say it was perfectly normal. again, suspicious.

with the diagnostics at hand, one year is entirely too long to eat 'normally' and wait. there is also no such thing as 'borderline' range. it is either positive or negative.

I went to my allergist to get my annual allergy testing, and on top of the usual seasonal suspects (ragweed, grass, etc), he found an allergy to oats, barley and rye, and highly allergic to flaxseed. His advice was to get off gluten completely. He also does a full-range of blood tests and everything is normal, but he found an autoimmune reaction of some sort, which he suspects is arthritis.

I really don't know what to do. My GI doctor said not to go off gluten, my allergist does, and my mom worries going off gluten will be "bad" for me.

I'm 27 years old, female, with an aunt who is positively diagnosed as celiac. My GI symptoms have gotten less severe over the last year, but have included, diaherria, constipation, bloating, and big weight fluctuations (up and down). I also have skin rashes of unknown origin, and am usually exhausted. My allergist said my skin pallor is pale and the dark circles under my eyes tell him my body isn't as healthy as it should be.

Anyhow, I have an appointment with my family doctor next week for a nutritionist referral if I decide I want to go gluten-free. Just looking for some opinions from people who have "been there before." The negative AND positive blood test, and inconclusive biopsy is what has really confused me.

Thank you, it is greatly appreciated it.

K

if you are showing allergies to gluten, along with your previous tests, i would take it as a positive diagnosis. go gluten free. if your problems begin to resolve within a few months, then you will know conclusively.

btw -- gluten free is not 'bad for you', in fact, being gluten free can help you to avoid lots of preprepared/process foods that contain gluten and eat a bit more healthily. there are lots of food choices -- and if you miss the occasional BigMac or Whopper or fried 'anything', it won't be a tragedy!!

good luck!

[ang1e0251]

Your dr's and their tests are giving you conflicting advice, but your body will not. Go gluten-free, your symptoms will either resolve or not. Your body will tell you what it needs and doesn't need. Just listen to it.

P.S. Your body is better informed than your dr's!