11 replies to this topic

[Peppa_minto]

My last post got a little beyond what I needed...basically I have been gluten free for a month and am now wanting to get a blood test. My doctor gave me the paperwork and told me to get the test in two to three weeks. I have mostly easy to live with symptoms... Dizziness, fatigue, constipation, bloating, gas, loose stools... My sister has celiac which is why I suspect this is where my symptoms come from. I am on a fairly high gluten diet, much more than just four slices of bread. Definately felt better gluten free, but I can manage a few weeks eating this way... I just don't k ow of my eating a lot of gluten makes a difference in two to three weeks being long enough or not.

[tom]

It's long enough for a lot of celiac patients.

http://www.celiac.co...ease/Page1.html
"The team concludes by noting that a 14-day gluten challenge at or above 3 g of gluten/day triggers cellular, tissue, and blood changes in most adults with celiac disease."

You always have the option of continuing to eat gluten after the test and then if it comes back negative continuing however long and scheduling another test.

[Peppa_minto]

I'm just starting to doubt I even have celiacs because my symptoms are not as bad as other people on this forum, for most people here the idea of eating gluten is terrifying. If my results come back negative I'll be even more in dpubt

[tom]

Maybe you don't have celiac but the people who stay active on forums are understandably those most affected in the first place, from what I've seen, so you shouldn't place much significance on not being as bad off as many members here.

Almost 50,000 ppl have joined this forum and the majority aren't currently active. I like to think that most of them are out there living healthy lives w/out gluten and just don't need further celiac info or support or whatever originally made them register an acct.

Good Luck w/ the test Peppa

[MitziG]

Don't discount the possibility just because you don't react severely to gluten. As a 30+ year un diagnosed Celiac, I had what would be considered mild reactions. I ate gluten regularly, and had some digestive issues, but nothing that could be directly attributed to what I ate. My biggest complaint was chronic fatigue. After being gluten free for several monnths, my reactions changed however, and became severe and immediate. When you eat gluten all the time, your immune system becomes so wore down it often can't muster more than a weak response. Once you are gluten free and it recovers, it will let you know loud and clear if gluten is the problem. That is the case for most of us anyway. There are a few "silent celiacs" who never get a noticeable reaction, but that is the minority.

[Christine0125]

I was fully functional on gluten just some annoying symptoms but never enough to call in sick. I did a 2 week challenge prior to my blood test and it was enough to get positive results.

[GFinDC]

Hi Peppa-minto,

Symptoms don't usually start out at the worst stage, just like cars don't go from 0 to 100 in zero seconds. But ongoing inflammation and damage does take a toll and most likely your symptoms would worsen after awhile. How soon that would happens is anybody's guess though. Some people develop additional auto-immune diseases and go to the doctor for that and then they get diagnosed for celiac.

Whether or not your doctor will diagnose you after a week challenge is for him/her to answer, we can't tell you what the doctor will do.

[tom]

I was fully functional on gluten just some annoying symptoms but never enough to call in sick. I did a 2 week challenge prior to my blood test and it was enough to get positive results.

Ahh Christine, glad you posted.
Do I remember correctly that the 2 week challenge was after 7 weeks gluten-free?

[Peppa_minto]

I just realized I never checked to see if my elmiron prescription was gluten free... Did a google search and got mixed results.... Maybe I was never gluten free after all?

[Jestgar]

I'm just starting to doubt I even have celiacs because my symptoms are not as bad as other people on this forum, for most people here the idea of eating gluten is terrifying. If my results come back negative I'll be even more in dpubt

My gastro symptoms were mild - it's the long term neuro things that got to me.

[Peppa_minto]

Well my symptoms are worsening a little again. I don't know if there is gluten in the elmiron capsules... But if there is, maybe the fact that I didnt stop taking them when I thought I was gluten free will help the accuracy of my bloodwork. Of course, idk what I will do when I go gluten free again. Maybe empty the capsules into water and take them that way?

[GFinDC]

Well my symptoms are worsening a little again. I don't know if there is gluten in the elmiron capsules... But if there is, maybe the fact that I didnt stop taking them when I thought I was gluten free will help the accuracy of my bloodwork. Of course, idk what I will do when I go gluten free again. Maybe empty the capsules into water and take them that way?

I don't know about the elmiron capsules. It would be better to get some that are known to be gluten-free. Regarding your symptoms not being too severe. Most people in the USA who have celiac don't know that they have it. There are many reasons for that but some are:

Most people with celiac do not have digestive symptoms.

Most people with celiac are not tested by their doctors.

etc

Judging your possible celiac by your digestive symptoms is not a good idea. If you have digestive symptoms and they improve on the gluten-free diet, that is a reasonable thing to assume you have a gluten reaction.

But since most people with celiac don't have digestive symptoms, assuming your GI symptoms are mild and that means you don't have celiac is incorrect. Celiac is not an instant change for most people. The damage can build up over years and get worse and worse. And it may be symptoms in your joints, or skin, or liver, or brain to first be noticed, not your your GI tract. That's one of the reasons it is hard to diagnose celiac disease, the symptoms aren't always in the gut. So doctors don't even think to test people for it. Unless you come in to the doctor with a "classic" GI case, they don't see the connection.