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Celiac Testing
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Hi everyone,

 

I am new to this forum. 

 

The past few years have been difficult. I am a 28 year old woman, and I've been on a medical rollar coaster.

 

In 2010, out of the blue, I started getting extremely intense headaches and I had nerve pain going down my right arm (neuropathy down my arm and into my pinky and ring finger). I was absolutely out of my mind. PT wasn't helpful, but acupuncture curbed the nerve pain somewhat. It still flares up from time to time, though. That ordeal lasted around 5 months.

 

There was a window of a few months were I felt relatively OK.

 

In the spring of 2011, I started getting nauseated after meals. The doctors told me it was probably reflux and told me to take prilosec. I went into a downward spiral into GI hell and I lost about 35 pounds. I was at a healthy weight before the drop, so I became very, very thin. They found out my gall bladder was sluggish, but there were no stones (biliary dyskinesia). They DID test for celiac during this time (via intestine biopsy), but lost the results. My GB was removed and I felt improvement in my digestion after a month post op. I made the connection between Celiac and GB issues with these articles...

 

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1433691/

http://www.ncbi.nlm.nih.gov/pubmed/6716342

 

All was still not well. Some days I felt like I was about to puke all day long, and I couldn't figure out why. Doctors shrugged and gave me more prilosec. I went on the paleo diet as an experiment in the summer of 2012, and a lot of my nausea disappeared. Not totally, but it certainly took the edge off. I started introducing non paleo things back into my diet, and wheat was what was setting me off. Over the fall of 2012 I fell of the paleo wagon and was in a perpetual state of nausea. I cut out wheat again this spring and I feel so much better. 

 

TMI BELOW!

 

When I eat wheat these days, I get very bad diarrhea. My period is also heavier when I don't eat wheat - when I was eating wheat I was skipping periods, or they would be very very faint. 

 

I suspect with the neurological symptoms (is the type of neuropathy I experienced a symptom of Celiac?), the loss of my gall bladder and the GI symptoms I experience with wheat that I have Celiac disease. I am treating it as Celiac disease and cutting all wheat out. Is it irresponsible not to get tested for Celiac? If I could get tested for it without purposely glutening myself I would, but I hesitate to purposely make myself sick. 

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to be honest,

its completely up to you if you want the testing or not. or whether you could cope with the symptoms long enough to have the tests. there,s many on here who havent had the tests and some - like me that had the tests and they turned out negative!!! you could be gluten intolerant rather than celiac -and you,d only know if you have the tests - either way its the same diet you,d have to follow.

some people struggle without a diagnosis ( i do)- but like i said its your call - i think the diagnosis only really helps if your younger - still at school/college where accommodations would have to be made for you (im from uk so not sure where your from, think this applies in america)

good luck :)

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If you are eating gluten at all, it might be worth your while to get tested BEFORE you commit to the gluten-free diet (it sounds like you are eating gluten light at the moment). Who knows, you might be consuming enough gluten to register positive blood tests - it doesn't take much, but do the tests sooner rather than later (when the autoantibody levels drop).

 

The blood tests are:

ttg IgA and ttg IgG

total serum IgA

EMA IgA

DGP IgG and DGP IgA

AGA IgA and AGA IgG (older tests)

 

You could also request nutrient levels be tested as celiacs are commonly low in iron, ferritin, B12, D, calcium and potassium. Thyroid problems are common in celiacs too so you might want yours checked.

 

Once you commit to the gluten-free diet, make sure you are on it 100%. Check your meds, vitamins, spices, sauces, and your baking ingredients (like baking powder or sugar) which might have become contaminated with wheat flour.  And good luck with it. I hope you continue to feel better.

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I haven't eaten gluten for about a month. Things aren't perfect, but I feel a heck of a lot better. 

 

It's kind of crazy how gluten makes it's way into the most ridiculous stuff...it's been an eye opening experience. 

 

Are there any brands of spices, as a whole, that aren't gluten free? 

Edited by zombiezombie
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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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