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Maybe Celiac? Waiting On Test Results

aeryn

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aeryn Rookie
aeryn
Posted

I had an appointment with my dr this morning and she ordered a blood test to test for celiac disease. I should get my test results tomorrow or the next day, but I'm nervous (and a bit scared) and could really use some sympathetic minds. This group seems to fit that bill :)

A bit about my symptoms - nothing too major, at least not compared with other things I've read on the site. I get gas/bloating from eating, stomach pains (only after eating, not before), and I have to stop eating at a certain point because I feel like I will become physically ill if I eat any more. This includes drinking (and I don't mean alcohol.) I've been able to eat less and less, to the point that I've started to lose weight. I occasionally get D, but I'm also lactose intolerant. Frequently however I get hot flashes with the gas. It used to be that the gas was just uncomfortable, but the stomach pains are definitely getting worse, which is what sent me to the dr. I have tried over the counter gas relief aids in the past, and they have had no effect.

I hope that I don't have celiac, but there's also a bit of "if it's not that, is it something worse?" If I do have it, I'd like to try to be somewhat prepared for the change I will have to make in my life.

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lizard00 Enthusiast
lizard00
Posted

Welcome to the site! I would never wish celiac on anyone, but sometime's it represents a huge closure to have an answer to what's causing so much disruption in your life. And it's pretty easily treatable. Anyway, I hope you find the cause to what's ailing you!!

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm glad your doctor was wise enough to test you. Do be aware that you should not go gluten free until all testing is done and many times doctors will send you for an endo to check your intestinal villi. After the endo, if you are having one, is done then do try the diet as false negatives with blood tests and endo are higher than we would like.

Jordan E Newbie
Jordan E
Posted

My tests are being processed right now. I am right there with you

I'm a 22 year old male, in otherwise impeccable health.

When I turned 18, I started to get a rash on my chest. It slowly developed across my back, and is now totally covering my whole back.

At age 20, I saw 6 different Dermatologists, including several "experts" at the Huntsman Cancer Institute at the University of Utah. For a long time, we thought this might be CANCER! I was so scared, and even more frustrated when they told me that it wasn't cancer, bacteria, virus, parasite, fungus or anything! Dermatitis. Really? That's the best you got? They gave me a steroid cream that took the inflammation out for a day or two, and it was right back soon after.

Recently, within the last few months, I started to correlate my eating habits with several other seemingly unrelated symptoms. I noticed that I was getting regular vision loss. A vision expert would tell me it was "Occular Opthalmic Migraines" when my right eye would simply turn off. I have had chronic diarrhea for years, stomach pain, serious anxiety and depression, mood swings, tingling in my hands, feet and lips, and many other funky things going on in my body. I had no idea what was going on.

I decided to go off Gluten for a week, and I was astounded at how amazing I felt! I slipped up and ate some spaghetti one day for lunch and was done for the rest of the day. I felt terrible. I decided that a doctor's visit was necessary. In an effort to maintain normalcy for the blood tests, I have eaten a moderate amount of gluten in the days prior.

My sympathies are with you, my friend. I have noticed that it's really not that scary of a change, just be mindful of what you eat and just pay attention to how amazing you feel when you're off Gluten!!!

aeryn Rookie
aeryn
Posted
  • Author

Man, I wrote out this whole response and then clicked the wrong button and lost it all. I hate that!

I had actually checked out this site and forum before going to the doctor, and was going to bring it up but I didn't have to! I won't try going gluten free until after all my testing is done, but regardless of the test results I'm going to try it to see if it helps any.

I've seen it mentioned a few times that you have to be careful of gluten in the environment (like shampoo and pet food.) Does just getting gluten on the skin cause a reaction? I thought it had to be ingested?

I've been reading around the forum more today and I guess I have more symptoms than I thought. I'm just going to bullet list them, cause I'm too lazy to write it all out again lol :

- thinning hair (it used to be so thick that I never braided it or put it up because I couldn't hold it all in my hands. Now I can hold it all in one hand easily)

- grey hair (I attributed this to stress at work...I'm only mid twenties)

- overly emotional, including extreme anger over stupid little things (always blamed this on womanly issues)

- migraines (I've had them since 6th grade)

- rash on my arm that looked like ringworm, but didn't respond to antifungal meds

- eczema (this only cropped up in the last couple of years, about the same time the stomach pains started)

- surgery for hernia repair (at 4 yrs old)

I think that was it...they may all mean nothing, but it's got me thinking about every little thing that is going on with my body!

ravenwoodglass Mentor
ravenwoodglass
Posted

I've seen it mentioned a few times that you have to be careful of gluten in the environment (like shampoo and pet food.) Does just getting gluten on the skin cause a reaction? I thought it had to be ingested?

Gluten isn't thought to penetrate intact skin but it is absorbed by mucous membranes and residues left on your hands or transfered to your hands and then to the mouth or nose etc. can be an issue. Also airborne gluten, like in sanding drywall compound or someone baking with wheat flour gets inhaled and can go into your system.

aeryn Rookie
aeryn
Posted
  • Author

Gluten isn't thought to penetrate intact skin but it is absorbed by mucous membranes and residues left on your hands or transfered to your hands and then to the mouth or nose etc. can be an issue. Also airborne gluten, like in sanding drywall compound or someone baking with wheat flour gets inhaled and can go into your system.

Ok, that makes sense. I wouldn't have thought of gluten in drywall though!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Ok, that makes sense. I wouldn't have thought of gluten in drywall though!

I didn't either till I got really sick doing drywall work and then checked a website that gave the ingredients. Wallpaper paste was another one that got me. Even stuff like white glue and playdough can be a problem. I play it safe when doing crafts or home repair now by wearing gloves and a mask and washing up really good when I am done.

aeryn Rookie
aeryn
Posted
  • Author

I still haven't heard the results of my blood test :( I know they're probably just busy, but the waiting sucks

aeryn Rookie
aeryn
Posted
  • Author

The blood test result was negative. At my appointment the doctor had prescribed that I take an acid reducer every day for 30 days and we scheduled another appointment for 30 days from the first one. I'm not sure if I should wait the 30 days, or get another appointment for further testing. Should I just go ahead and try a gluten free diet to see if it helps, or pursue more testing first?

ravenwoodglass Mentor
ravenwoodglass
Posted

The blood test result was negative. At my appointment the doctor had prescribed that I take an acid reducer every day for 30 days and we scheduled another appointment for 30 days from the first one. I'm not sure if I should wait the 30 days, or get another appointment for further testing. Should I just go ahead and try a gluten free diet to see if it helps, or pursue more testing first?

If you are not going to persue a biopsy then go ahead and get on the diet, strictly. Chances are you won't need the acid reducer and once started those can be hard to get off of. Do delete dairy for a bit when first on the diet also.

aeryn Rookie
aeryn
Posted
  • Author

I think I'll reschedule my next appointment with the dr to be sooner, so I can discuss the test results and where to go from here.

I picked up a copy of my lab results on my way home tonight and the tTG AB IGA was <3

The explanation says that <5 is negative, 5-8 is Equivocal, and >8 is Positive

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