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Testing For Celiac's


jj91709

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jj91709 Newbie

I have a host of symptoms and am wondering if they're related to Celiac's. I've never had a Celiac's diagnosis. Here's a quick rundown:

1) Diagnosed with Osteoporosis last year (I'm a 36-year-old male). I went in for a check because my brother was diagnosed and he is 39-years old.

2) Iron levels are in the very low-end of normal. Take supplements now.

3) Low Vitamin D levels, but have improved now with supplements

4) Chronic heartburn for over 15 years. Was on Prilosec and Protonix (Proton Pump Inhibitors) to treat the heartburn. Doctor was suspect that maybe that influenced the osteoporosis

5) Have suffered from anxiety and OCD-like symptoms such as tapping excessively. Have been on meds such as Fluvoxamine, Prozac and others in that same class

6) Lots of gas pain, cramping-- have been drinking Lactaid milk for years

7) Extreme gas reaction to garlic. I mean "peel the paint off the walls" extreme...

8) Constantly fatigued

9) Doctors took me off of Prilosec and heartburn was horrible again. Just went in for an Upper GI a couple of weeks ago. They say I have a loose valve between the esophagus and stomach, plus mild gastritis

10) Beer makes me extremely gassy

11) This morning I had a big protein drink with Whey Powder and I had to leave work later cuz my stomach hurt so bad. It still hurts more than 12 hours later.

12) Diagnosed with Irritable Bowel Syndrome years ago which seems like a "catch-all" diagnosis, like complaining to a doctor that your elbow is sore and he says you have "Sore Elbow Syndrome". Duh

13) Just under 5'8". Have been under normal height my whole life, especially as a child. I weigh 160 pounds.

They did a biopsy of the gastritis a couple of weeks ago but said that it was 'normal/no cancer' though I don't think they were looking for Celiac's-- just cancer. I called my doctor and asked him to have me get labs drawn for Celiac's. I'm awaiting results on those any day. But I'm not sure what a "Celiac Panel" is. I've seen people reference that in this forum.

What do you all think? Does it walk and talk like a duck (sound like celiac disease)?

I just went to the store and bought a bunch of gluten-free stuff and am going to try the diet for awhile.

I'd appreciate any input you all have. Does it sound like Celiac's? What does a Celiac Panel consist of? Is a Celiac Panel close to 100% accurate? Thanks everyone!

-- Wheatless in Seattle


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ShayFL Enthusiast

Hi!

Response to the diet is the only 100% accurate way to know.

The Celiac panel usually consists of antibodies to gluten and gliadin and your overall IgA antibody level. If they only test IgA antibodies and your total IgA come in deficient, then will need to retest for IgG antibodies.

Post your results when you get them. Ask your doctor for a copy of the labs. We will need to now the reference ranges as well.

lizard00 Enthusiast

It definitely is worth a shot. Check out Peter Green's book Celiac Disease: A Hidden Epidemic.

It specifically mentions osteoporosis as a side effect, and that while Celiac is more common in women, in men it is usually worse. So, your osteoporosis at such a young age sends a big warning flag to me.

Positive response to the diet really is the best diagnostic tool, but be aware that if you want blood testing or another EGD, you need to remain on gluten. The test doesn't exactly have a huge accuracy rating, but if you stop eating gluten you decrease your chances of having a positive result.

Welcome to the forum!!! Please feel free to ask any questions :D

Ursa Major Collaborator

Here is what I think. Anemia in males is very rare, and is enough reason to get celiac disease testing done. Sometimes it is the only obvious symptom of celiac disease in males.

Osteoporosis at such a young age is also a red flag for celiac disease, as is reflux, low vitamin D and low levels of other nutrients.

Celiac disease is genetic, and having a brother with it, plus all your symptoms screams celiac disease to me.

Short stature is also a typical symtom, as is lactose or casein intolerance and mental health problems.

So, even if your test results come back negative (which isn

jj91709 Newbie

Thank you everyone. I will post my results as soon as I find them. I've been gluten-free for 24 hours now! Seems to be a much healthier way of living if nothing else :)

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    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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