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Mabc

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Mabc Apprentice
Mabc
Posted

After suffering for many years with various health problems, I finally found out a lot of my symptoms matched possibly celiac. So in May I went gluten free and for 6 weeks I had lots of improvement. Then I decided to go back on gluten to see what happened. Within one day all my symptoms came back, especially brain fog and an achey feeling in my brain (hard to explain).

I don't think I can convince my doc to test for celiac at this time so I'm thinking that symptom improvement is reason enough. Is there any other reason my symptoms would have improved so much on the diet or is it common for people to feel better going off of gluten?

Thanks for any advice.

Melodi

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JenAnderson Rookie
JenAnderson
Posted

If you go on the diet and your symptoms dissapate then there's obviously a problem. Usually when you go on the diet and then you get off it again, the symptoms come back and then there's other things that show up that you didn't realize were there before you got on the diet. The military doctors and not very willing to diagnose celiac or test for it. I was really sick for a long time before I got the dx. The best thing I can say is to find a doctor that will work with you and is willing to test for it.

kbtoyssni Contributor
kbtoyssni
Posted

The problem with testing at this point is that since you haven't been eating gluten, blood tests or scopes won't give you a positive diagnosis. You have to be eating about three servings of gluten for three months prior to testing if you hope to get a positive dx. Which you may not want to do. I was in a similar situation. I figured out it was gluten, and I didn't want to go back to eating it just to get the diagnosis.

The one way to get tested without eating gluten again is enterolab. You send them a stool sample and they do the testing. I haven't had it done, so maybe someone else here can give you more details.

CarlaB Enthusiast
CarlaB
Posted
The one way to get tested without eating gluten again is enterolab. You send them a stool sample and they do the testing. I haven't had it done, so maybe someone else here can give you more details.

I did it and was happy with them. www.enterolab.com

jenvan Collaborator
jenvan
Posted

If your doctor refuses to test you, then I would go to a different doctor, or go through enterolab or another.

tiffjake Enthusiast
tiffjake
Posted
After suffering for many years with various health problems, I finally found out a lot of my symptoms matched possibly celiac. So in May I went gluten free and for 6 weeks I had lots of improvement. Then I decided to go back on gluten to see what happened. Within one day all my symptoms came back, especially brain fog and an achey feeling in my brain (hard to explain).

I don't think I can convince my doc to test for celiac at this time so I'm thinking that symptom improvement is reason enough. Is there any other reason my symptoms would have improved so much on the diet or is it common for people to feel better going off of gluten?

Thanks for any advice.

Melodi

I did the same thing. Then it was weird talking to my doc about it, because I knew what was wrong, and I had to convince HIM! (And later, a HER doc...). If you want the tests, then get back on the gluten so they can "test" you. For me, the longer I am gluten-free, the harder it is on me to have it. I got glutened tonight, and if I thought there was anything they could do for me, I would have gone to the ER!!!!

If you don't care about the tests, then good deal! You are feeling better! That is awesome!

(And you do have to be eating gluten to get the EnteroLab test. You have to have had it within the last 29 days at the minimum.)

taz sharratt Enthusiast
taz sharratt
Posted
After suffering for many years with various health problems, I finally found out a lot of my symptoms matched possibly celiac. So in May I went gluten free and for 6 weeks I had lots of improvement. Then I decided to go back on gluten to see what happened. Within one day all my symptoms came back, especially brain fog and an achey feeling in my brain (hard to explain).

I don't think I can convince my doc to test for celiac at this time so I'm thinking that symptom improvement is reason enough. Is there any other reason my symptoms would have improved so much on the diet or is it common for people to feel better going off of gluten?

Thanks for any advice.

Melodi

if your symptoms have improved i would lead with that diagnoses.

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      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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