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Any Advice Where To Begin?

pattic

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pattic Rookie
pattic
Posted

Hi everyone! been lurking, this is the first time I'm writing. You are all so nice & helpful!

I'll get to the point since you've all been there, done that already!

Told by nutritionist 8 years ago to avoid wheat (based on symptoms).

I did and of course felt so much better.

After 6 years off gluten, I had a colonoscopy (mom had cance at 60-doesn't drink or smoke, Italian-all homemade food-she might be a celiac too?). Dr told me no reason to avoid wheat. (uneducated?)

I started eating everything. It took a couple of months, but caught up with me.

So, I've been back to gluten free for 2 months, and of couse, feel so much better!

I didn't know about celiac disease until now.

Is it too late for blood work since I'm off gluten? what about food allergy testing, biopsy, celiac panel

or dna testing????

I keep reading, 'what difference does it make to be dx'd if the diet works, just do it'. That's very true and I will stay gluten free. However, I do suffer from another autoimmune disease, and feel that I should know for sure about my health.

so, what's the scoop ~ get tested or not? if so, where do I begin?

~Patti in NJ~

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Lisa Mentor
Lisa
Posted

I think that you are on the right track. If you feel better being gluten free, just continue. Some people want a name to call things. I had never heard of celiac disease until I was dx'd. It was quite a surprize, but a welcome one since I thought I may have cancer.

Testing can be expensive. If you feel comfortable without being tested and you continue to improve on a gluten free diet. Do just that :)

If you have any other questions, please feel to ask and welcome here.

Lisa B.

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marciab Enthusiast
marciab
Posted

I have CFIDS and Fibromyalgia, so I have an autoimmune system disease too. I am hoping this diet will help me with the symptoms I have been suffering with for 16 years. So far, I have noticed a small improvement in my fatigue and a huge difference in my stomach problems.

I lurked too in the beginning and now I am all too happy to post. These people have been wonderful. I haven't felt this good about myself in a very long time. Finally, people who understand, are non judmental and helpful.

I saw a GI doctor for over 2 years complaining of bloating, gas, severe abdominal pains, and bouts of "C" and "D". I had an endoscopy, colonoscopy, upper GI, and was even tested for Gastroparesis. So I know I have diverticulitus, erosive gastritis, hiatal hernia, partial gastroparesis, IBS, whatever. Even had my gallbladder out. And, I wish my GI doctor had done a celiac biopsy on me so that way I would know for sure, but I am not so eager to go have any more tests run.

I've been on the food allergy / sensitivity diet for 6 months and the gluten free for 5. The diet IS working. I'm still figuring out what foods I need to avoid, cause I'm a slow learner. And it takes me at least 4 or 5 attempts to learn my lesson. But I say if it helps, why not stay on it ?

Good luck marcia

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pattic Rookie
pattic
  • Author
Posted

thanks ladies!

I did more research and I'm in the process of trying to get the dna test done. Since I've been gluten free for so long, it seems like the only accurate thing I can do. If I have the gene, then I'll know I'm not crazy. If I don't, I guess other food allergy/intolerance tests will need to be done.

Geez Marcia, you poor girl going thru all of that!

Have a great weekend!

~Patti in NJ~

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Canadian Karen Community Regular
Canadian Karen
Posted

Hi Pattic!

Welcome to the board! I am glad you are getting some answers and the info on here is helping you out. Any questions you have, just fire away! There are so many helpful and knowledgeable people on here who have been down this road before and know how difficult it is.

I wanted to mention a few things. Firstly, you mention your family is Italian. Did you know that in Italy, celiac disease is so prevalent that they test all children for it?

Also, your body has had a positive response to eliminating wheat, but have you searched for all sources of gluten in your diet? Medications, vitamins, shampoos, lotions, toothpaste, etc. Every little trace eliminated will make you feel that much better.......

The blood test for antibodies is pretty well out of the question for you now, but have you considered Enterolab? I have not personally used them, but many members have and have gotten answers there that they didn't get from poorly informed doctors.

Good Luck and welcome!

Karen

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pattic Rookie
pattic
  • Author
Posted

thanks karen! yes, I am aware that celiac is very prevalent in a lot of european countries. I asked my mom if she had any symptoms and she got defensive - she's a very quiet, keep it all inside, private person. but, I can't help but wonder if she is a celiac too, and after 60 years of not eating gluten free it may have contributed to colon cancer -? (btw-that was 6 yrs ago and she's cancer free now :)

I'm very good about reading labels etc, but don't do everything I could be doing. Once I find out if I have the gene, I will take it more seriously than just eating gluten free - I will get a separate toaster, and use gluten free hygienne products, etc.....having true celiac disease (autoimmune disease) in my mind is different and much more serious from an allergy that causes temporary discomfort.

I have a dr appt friday (love my dr) to have him go thru the right channels. my wonderful ins will pay 80% based on the codes I got from kimball genetics. they told me a negative on the gene is 97% accurate and rules out celiac disease; and if one gene is found, along with my lifelong symptoms, it's safe to call myself a celiac. so, we shall see. I'd even pay the $292 myself if necessary, just to find out for sure after 34 years.

Bless you sweet woman - mom to 4, including a set of twins!!!!!!! And you still have time to write on this board! LOL

thanks for the info, and your valuable time! have a great weekend!

~Patti in NJ~

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Guest nini
Guest nini
Posted

I'm sorry but a negative on the gene test is still not the be all end all definitive that you do not have it. As I posted on another post, there are many biopsy proven Celiacs that DO NOT have either of the KNOWN Celiac genes. The medical community is still sadly lacking in their ability to accurately dx this disease. The ultimate test is positive response to a 100% gluten free diet, although even with that some people are asymptomatic and still have damage to the villi. testing is not perfect. It can only rule it in, NEVER completely rule it out.

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