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cathybee

What I Don't Understand

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I was told I had Celiac in 2005 by a blood test. I went on the diet, found this board ...just read mostly cause I don't have all the trouble most of you do so I just don't feel like part of the group. If I eat wheat by accident I don't even know it cause I don't have any side affects. The only reason they even tested me was I have arthritis bad and they could not find out why it was staying so inflamed and ran a lot of test on me.

With me, dairy hurts me more then gluten and all it does is gives me bad stomach pains.

I would have to say my mom had Celiac Disease from what I read but they never diagnosed it as that and only said she had allergies to wheat. She died never knowing what she had. I took care of her and know what she went through...a lot of what I read here in the board.

So here I am thinking I must have it since mama did and the blood test said so...right? Don't get me wrong, I don't want more then I have right now but wonder if I was missed diagnosed. My arthritis is still bad and inflamed and they can't find anything to help me with the pain so I am now crippled with it. Is there anyone else like me here?

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As I understand it, Celiac can sorta sneak up on you. So you might not have noticeable symptoms now, but continuing to eat gluten could lead to it going full-throttle. The problem with dairy is common as I'm sure you know. What matters is not just how you feel, but how your body does on the inside. If gluten causes the autoimmune response in you as it does in any Celiac, then you need to remain gluten-free. Not doing so will eventually lead to enough intestinal damage such that you will be forced to take notice, and by that time you'd have big problems.

I guess my question is what about getting a biopsy/colonoscopy/etc to check for damage? Also, how long have you been on the gluten-free diet, and have you also checked your skin/hair care products, dish soaps, etc?

I never bothered with getting tested, so I'm not quite sure what tests would be most appropriate for you at this time. I do know however that it can take a long time for certain conditions to show signs of healing. I'm probably nearing 3 years gluten-free and still it's a mighty struggle on a daily basis.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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Hi and welcome to the boards. I did not have any tummy problems that I thought signified anything for many years. Mostly D associated closely with my periods and constant tummy rumbles. It wasn't until after my DD was born that the daily D set in. But I had joint, skin,balance and muscle problems since childhood.

One of the most painful was the arthritis. By the time I was diagnosed considerable damage had been done to my joints, in particular my hands. They hurt so bad that I had trouble even holding a cup, opening jars was close to impossible and painting or holding my glass tools was out of the question. When I was finally diagnosed the last thing I expected was to have my arthritis go away. I, in a way, was lucky because the damage to my intestines was so severe that I react to even the smallest amount of CC. I found that before the arthritis went into remission that I had to eliminate the gluten from everything I came in contact with or ate. This included shampoos and art and home repair supplies and even my pet food.

One thing that you need to do today is get ahold of your pharmacist and gather together all your OTC drugs and call the makers. There are no regulations by the FDA about gluten in meds or about the need to let us know it is in there. Your biggest risk are things like Tums and generic brands of script drugs. With no resolution to your arthritis after all this time I would be willing to bet you are getting gluten somewhere. You need to have those blood tests run about every six months or so to check and see if your levels have gone down.

Your not alone, there are some folks here or folks that have a family member who is celiac and 'asymptomatic', or who think they are. My DH didn't think he had symptoms after a positive blood test but after a couple months totally gluten-free he came to realize that many things he thought were just a normal part of ageing or being a guy really were not.

I hope you get some relief soon, all I have left now after 5 years gluten-free is knobby joints but no pain. It took about 6 months strictly gluten-free to get to that point but now my arthritis doesn't even flare with a good glutening.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi, just wonder if they also checked you for Lyme disease? Sound like you didn't have a biopsy?

Also have you been really strict on the gluten free or just avoiding obvious wheat products?

I am glad you are asking, and hopefully you'll get a number of responses that will help you.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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