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Prospect Of Being Celiac Is Getting Me Down

Oneiros

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Oneiros Newbie
Oneiros
Posted

Hi guys. I've recently discovered the whole gluten free thing, after about a month of feeling ill in the stomach every day (plus other things). Spoke to my mum who suggested gluten intolerance, so I did a bit of research and started cutting out gluten. It worked. Initially I felt good getting relief from all those uncomfortable symptoms and finally working out what was wrong. I ate a tiny bit of gluten a few days later and started feeling sick again, so I'm fairly sure that is the problem. Based on my research and symptoms I think I will be celiac. I'm in the process of blood tests etc.

As it starts sinking in I'm really starting to feel depressed about the prospect of having celiacs. I'm prone to depression anyway (on meds and have been seeing a psych the last few years). So I guess I'm just looking for some encouragement and understanding from people who have been through this. Any advice is welcome.

Thanks. Luke

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eatmeat4good Enthusiast
eatmeat4good
Posted

Hey! Welcome!

Depression is one of the symptoms of Celiac that might go away if it is from Celiac.

I hate to tell you this but....

Being gluten free will make you test negative.

You have to eat gluten to have the antibodies to test postive.

I hate saying that because I'm sure not recommending you eat gluten.

But what happens is some people go gluten free and then try to get tested but they have to go back to eating gluten for several weeks on a daily basis. Ugh. I couldn't do it.

You might love being gluten free if your symptoms go away and stay away!

However, it is distressing to change you whole entire way of eating.

But you get used to it and you might even find some wonderful new foods you like.

Your little gluten challenge sure indicates that your body doesn't like gluten whether you are Celiac or not.

I hope you feel better soon.

I was able to get off all depression meds when I went gluten free. And my headaches went away too.

I hope wonderful things like that happen to you.

Then gluten free really ain't so bad. :)

MitziG Enthusiast
MitziG
Posted

Yes, if you have been gluten-free more than a week or two, you run a big risk of a false negative, so if you are doing blood tests, start eating gluten again at once! Depending on how long you were gluten-free, you may need to wait a few months before testing. Sorry!

GFinDC Veteran
GFinDC
Posted

Hi Luke,

Welcome to the forum! Yes, to the depression being linked to celiac disease. Celiac can sometimes cause larger protein fragments into the blood stream, where they may eventually affect the brain. That is often called leaky gut. It seems some sections of the proteins in gluten in dairy are clsoe enough in form to opiods tha tthey can bind to the same receptors in the brain. So there can be a direct affect on the brain. Another issue that can affect mood etc is lack of vitamins and minerals. Celiac can impair the absorption of vitamins and minerals that are needed for the brain and the whole body. B-vitamins are often cited as being affected. The B-vitamins are important for proper nerve growth and healing. That means they affect the brain also. Silly thinig is full of nerves! :)

The good thing is that after a while on the gluten-free diet your gut can heal and absorb vitamins better. It's not fast though, might take year or two. You could ask your doctor to do a blood test for vitmains and minerlas and then you would know if you are low on any of them. There is also a celiac disease antibody panel they can run. But it is not 100% reliable, especially when they results are negative. Positive results are pretty reliable.

Here are some threads with reading info:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

How bad is cheating?

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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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