Misdiagnosed?

[hazeleyez682]

About two months ago i saw a doctor because i was having chronic dirreah and weightloss. The doctor did several tests one being the anti ttg. She called and told me that the ttg was at 3% and to try going gluten free. Since then i have gone gluten-free but i am still having chronic dirreah and have lost another 3 lbs. Yesterday i ate gluten-free cereal, gluten-free pasta and fruit and this morning had terrible dirreah. Could this be a misdiagnosis??

[Wolicki]

It's possible, but more likely a secondary food intolerance. You may want to keep a food diary and elimination diet. Also take a good probiotic and enzyme, gluten free of course. It takes some detective work to figure out sometimes. Hang in there!

[Brooklyn528]

You might need some more fiber. Try a supplement like Benefiber or Metamucil. You can get the store brands which are cheaper but work the exact same way. Also, try the above suggestion. Maybe have your GI or PCP check your vitamin levels also. You might still be deficient.

Hope to help,

Brooklyn

[mushroom]

Make sure you have cut out all lactose too; this was a major source of diarrhea for me.

[bethlany88]

Aslo be sure you are really cutting out all gluten - I thought I was and wasnt. Cross contamination in products that do not list gluten as an ingredient will also keep you sick. And yes dairy is not tolerated by almost half of celiac patients.

[Odessa]

Hi - I just joined and feel somewhat relieved to have found this site, but I am still looking for a doctor in MD to test for actual Celiac disease. I have been gluten free for the most part of 6 months (after tests doctor suggested trying it)- noticed after about 3 weeks all my joint pain disappeared throughout my body! for the first time in a very long time I didn't have any joint pain. Recently, I have been reading alot about gluten intolerance etc., and have found alot of helpful food products and books about the subject.

However, yesterday I made some bread (actually tasted ok) BRM bread mix and didn't realize or think about it - that I can't eat garbanzo beans, and it had garbanzo bean flour in it! So needless to say I had a bad reaction to the flour!! So if it says gluten free - doesn't always mean that you are not allergic to other food items listed! Read the labels!

Also I am drinking grass fed cows milk - which I think is helping my dark eye circles appear less dark!!

I have been trying to eliminate corn, corn syrup etc., also from my diet as I cannot eat corn! (which cows eat) there is so much of it in everything as with gluten- it's really hard to do!

Also I read in a book that carrageenan along with other additives can act like gluten in your body! So I have been trying to read labels etc.,

Well I haven't really been misdiagnosed, but not sure what to do next -

Test I had :

Gliadin Ab, SIgA - 20 - Positive

also had other tests indicating low cortisol, zinc, vitamin D levels.

My conclusion is to eat meats (preferably grass fed) protiens, vegetables, fruit, and fish! wow just regular food! and brown rice!!! Ok so what's next - Move to the country and live on a farm!

[weishy]

I agree with what they said about products claiming they are gluten free but may actually have gluten in them. I have found products marked as gluten free, but in a smaller print it says, 'made in a factory with wheat.' Stay away from those products. A recent article I read also stated that some products that claim they are gluten free, but do indeed contain traces of gluten in it. Unfortunately it didn't state which ones. I'd stick with products that are largely to make food for celiacs like kinnick, glutino, etc. Also there are some debate about whether or not oats is a source of gluten. i know my son can't tolerate those either, so that's a possibility.

Another thing is that before anything goes into your mouth I would make sure your hands had just been newly washed with soap and I wouldn't touch anything else. If you're eating something at a coffee shop (where gluten eaters eat), and you happen to sit in a chair where someone had a wheat croissant and rubbed their hands on the chair, that spot would potentially have gluten on it. If you rub the same areas, it's possible to get it on your own hands and ingest it if you then handle your food.

Regarding cooking in the kitchen, I wouldn't mix cooking/eating utensils together when it comes to cooking gluten...unless you're going to wash it crazy good.

Good luck!

Hi - I just joined and feel somewhat relieved to have found this site, but I am still looking for a doctor in MD to test for actual Celiac disease. I have been gluten free for the most part of 6 months (after tests doctor suggested trying it)- noticed after about 3 weeks all my joint pain disappeared throughout my body! for the first time in a very long time I didn't have any joint pain. Recently, I have been reading alot about gluten intolerance etc., and have found alot of helpful food products and books about the subject.

However, yesterday I made some bread (actually tasted ok) BRM bread mix and didn't realize or think about it - that I can't eat garbanzo beans, and it had garbanzo bean flour in it! So needless to say I had a bad reaction to the flour!! So if it says gluten free - doesn't always mean that you are not allergic to other food items listed! Read the labels!

Also I am drinking grass fed cows milk - which I think is helping my dark eye circles appear less dark!!

I have been trying to eliminate corn, corn syrup etc., also from my diet as I cannot eat corn! (which cows eat) there is so much of it in everything as with gluten- it's really hard to do!

Also I read in a book that carrageenan along with other additives can act like gluten in your body! So I have been trying to read labels etc.,

Well I haven't really been misdiagnosed, but not sure what to do next -

Test I had :

Gliadin Ab, SIgA - 20 - Positive

also had other tests indicating low cortisol, zinc, vitamin D levels.

My conclusion is to eat meats (preferably grass fed) protiens, vegetables, fruit, and fish! wow just regular food! and brown rice!!! Ok so what's next - Move to the country and live on a farm!

[Quasior]

I was having symptoms even though I was on a strict gluten-free diet, then I took a closer look at what I was consuming: Toothpaste/hair care products/medication - they all had gluten in them!! It's in a lot of make up too, but since I don't even use it no worries there.

It might be sneaking in from lots of different sources, so my advice is to really look hard at what is going on, the above advice about other intolerances and cross contamination is all sound too, these are the only places I can and do occasionally get glutened now. And it does take time, but my GI symptoms were gone much faster than the other issues though!

Good luck! Quasior

[CeliacHusband]

A couple of weeks ago my wife & I did an iReport for CNN on her 6 year journey to get a diagnosis of Celiac Disease - you might find this interesting:

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