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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Just Want To Make Sure I'm Not Crazy
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6 posts in this topic

My mom called me a couple of weeks ago and told me that she had read in a few places about a connection between depression and gluten. I didn't think too much of it at the time since she likes to bring up lots of different things that could help with depression. I googled it later just to see if she was on to something.

And it makes WAY too much sense. I have:

1. Depression

2. Brain fog (which I had attributed to the depression)

3. Fatigue. I am ALWAYS tired, and am prone to insomnia. I can remember being tired even as a little kid. I use all my energy up at work, and am too tired to do much else when I get home.

Between those three, it was a miracle I graduated college.

4. Asthma

5. Back pain - I've thrown my back out a few times, and I'm only 25. Occasional random hip and knee pain too.

6. Bloating/gas (the bloating isn't as major as I've read on here, though)

7. Heartburn pretty much daily

8. Occasional unexplained D (not enough to worry me before now)

7. Various skin issues (though nothing that sounds like DH to me, so maybe that's moot. I guess the acne at least could be a symptom)

Also, my family: one grandpa has had bowel cancer, but that's not the side I'm most worried about. My mom's side, however, is rampant with high blood pressure, diabetes, metabolic syndrome, depression... I can trace my depression straight back to my grandma. My mom says that her depression and mine look eerily similar. Also, I have a cousin (very early 20s) with arthritis already.

I already have an appointment with my doctor to talk about getting tested. Fortunately, my husband and parents are all very supportive, though I'm not sure my husband really knows what it means yet.

I'm doing my research now to make the transition easier. I'm thinking I'll go gluten free, positive result or no. I'm actually finding myself a bit scared that this isn't the answer. I know hoping for celiac seems a bit weird, but a change of diet in exchange for being a functional human being sounds like a really good deal. How could it possibly be that simple? I'm so afraid I'm wrong, and I'll have to go back to just trying to be not depressed (anti-depressants make me TOTALLY non-functional), though I cope better now.

The only problem is I'm paying the rent right now by baking. Stopping baking won't lose me my job, but I'll get less hours, and still be working in a gluten-filled sandwich kitchen, and finding a job around here is not exactly a simple thing. (also, my husband loves homemade bakery. Breaking it to him that the flour has to go will not be fun. But maybe I can break it to him with gluten-free pie?)

So I guess I just need to hear it from someone besides my mom that I'm not crazy for thinking this.

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You are not crazy for thinking this or for hoping that it may be the answer to resolve many of your health concerns.

Make sure you keep eating gluten until all testing is complete. The blood tests measure antibodies that are produced when gluten is consumed - remove gluten and the tests are not accurate.

Take it one step at a time - the great news is you can already bake - you can learn to make fresh gluten-free bread. Keep reading and take a written list of your symptoms with you to your doctor's appt - it helps to have it in front of you when discussing the need for testing.

Make sure your doctor orders a full celiac panel. Blood tests for nutritional deficiencies are also important. Celiac disease interferes with proper absorption of nutrients, so vitamin/mineral testing can be a strong indicator of Celiac Disease.

Should all your tests be negative, it is a great idea to remove ALL sources of gluten for at least three months (six is better) to monitor symptom improvement. This will be tough given your job, but elimination is the only test for Non-Celiac Gluten Intolerance which can cause many of your symptoms.

Good Luck :)

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Thank you, GottaSki! I've been making extra sure to eat gluten recently for just that reason. I really want the positive diagnosis if for no other reason than to be able to give a heads up to my family. I really doubt I'm the only one that should be considering going gluten free!

Thank you for all the advice! It's good to know how best to proceed. It makes it a lot less scary, for sure!

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" I'm actually finding myself a bit scared that this isn't the answer. I know hoping for celiac seems a bit weird, but a change of diet in exchange for being a functional human being sounds like a really good deal. How could it possibly be that simple? I'm so afraid I'm wrong, and I'll have to go back to just trying to be not depressed (anti-depressants make me TOTALLY non-functional), though I cope better now."

I hope you will find a major root so your depression will come to an end. I can relate to "hoping" that you have celiac. Yeah, it really isn't hoping to have it, but hoping for the ability to get to the root of the problem If it is celiac, you can improve by a new diet plan. You can have some control. I admit I had trouble to open my e-mail with the news about my celiac when it came. I had tears in my eyes after I opened it. But it was a mix of regret and hope for the future.

It sounds like it could be celiac to me. ****Get well****

Diana

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Get your thyroid checked too.

Lots of those symptoms there too!

I have both.

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Thank you, 1desperateladysaved and kate1!

Yeah, I think I will be very nervous to get actual results! Right now I am coping by over-researching, so at least I should be prepared, right?

And I will add Thyroid to the list of things to bring up during my doctor's appointment. Thank you again!

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    • Hi Michael and welcome The celiac diagnosis process can be a little confusing. Some time ago I tried to put together some info and links that may be of help:    The key point would be to stay on gluten until you and your doctors are satisfied that celiac has been excluded. In your case that may include another test with a more complete panel as CyclingLady says above. If you go gluten free independently during this time you risk invalidating the results and adding to uncertainty. The second suggestion would be that should you succeed in eliminating celiac as a diagnosis then you have nothing to lose from trying the gluten free diet. I tested negative on blood and endoscopy, but removing gluten resolved or greatly improved a whole load of symptoms including anxiety, depression and that feeling of not being right that you outline above.  I say greatly improved because I can still suffer from anxiety or depression, as anyone can, but if I do, they're nowhere near as severe as they were when I was consuming gluten.  In the meantime, one thing you could do is to keep a food journal to see if you can track any relation between what you eat and how you feel. It's good practice for if you later try the gluten free diet and you never know what you may learn.  This is a good site full of friendly help and advice. I hope you get the help you need  
    • “I was coming here before I was diagnosed with celiac disease, but after, it was one of the few places I could go to since they had gluten-free items,” ... View the full article
    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
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