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Old 07-30-2009, 06:58 AM   #1
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kerry4 HB User
Celiac questions.

My wife is currently undergoing tests to identify what is suspected as Celiacs.

Here is some background. She has had H. Pylori twice in the past 6 years. A couple years ago she began having issues with digestion, upset gut, general overall feeling of unwellness. She has since been bounced through the medical systems with egd's and colonoscopy's with nothing concrete.

She did have a test last year that indicated that her amalyase was elevated and there were numerous conditions that could be the cause of this.

She has bowel urgency's quite quickly after eating, however she had to have a camera pill to track through her digestive system and the camera indicated that she had delayed emptying in her stomach.

Basically, the previous EGD's seemed to show nothing significant, but apparently no biopsies were ever taken so she is scheduled for yet another EGD here in a few weeks so they can biopsy and see if she may have Celiac.

I have been reading up on it and one thing that scares me is that prolonged undiagnosed of Celiacs could raise the probability of one's chances of acquiring a malignancy of sorts over that of a healthy individual.

In reality, what is the probability of cancer? Does anyone have any known facts? She is 27. Are the chances good that she will live a long fulfilling life if infact it turns out to be Celiacs?

Any details or reassurance would be appreciated.

Thanks!
James

 
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Old 07-30-2009, 10:02 AM   #2
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Re: Celiac questions.

I'm not a Dr, only a patient, but the risk is very small as I understand it. Yes, the risk MIGHT be higher but that risk needs to be put in perspective.It is my understanding that the risk of cancer is very small for most people to begin with, and so a little higher than very small is STILL very small. Please don't hesitate to ask your physician. I think that you will be very much relieved from worry. As a footnote, I'm 48 with celiac and expect to live a long gluten free life.
And all I have to do is be diligent about watching what I eat. Inconvenient yes, but really, once I healed, no big deal. I hope that your wife feels better soon!
Gretchen

 
Old 07-30-2009, 10:03 AM   #3
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Re: Celiac questions.

Hi James, sorry to hear your wife is having a bad time. I have felt bad for three years repeating myself over and over again to different doctors about my problems. My iron has been getting lower and lower and one doctor wants me to go into the hospital for infusion iron. I felt we should find out why I'm anemic in the first place but he dismissed that and said I should get the infusion no matter what. I decided to do my own research and found that celiacs can cause anemia and that if you have an auto immune disease like celiacs it causes nutrient malabsorption. I have two other auto immune diseases, Hashimotos thyroiditis and asthma, so I went to my general doctor and speciafically asked for the celiac panel and it came out positive. I knew it would after all the reading I did about it but now I had the proof. Talked to a friend of mine who has celiacs and she was also anemic but after her diagnosis and going off gluten her iron went right back up. No infusion needed. The problem with the celiac panel if if it comes out positive great, you know you knave celiacs but if it comes out negative you can still have celiacs the tests just didn't work for you. The other way to diagnose it is with a intestinal biopsy. You said she is getting a biopsy soon so thats good. Maybe that will show she has celiacs. She might also try to just go off gluten to see if that makes her feel better but she might not want to do it until after the biopsy because when you go off gluten your intestines start to heal and the biopsy may look normal even though she could have celiacs. I don't have much else to offer. I'm new at this celiacs stuff. I was just diagnosed a week ago. Good luck to you guys and hope you find answers soon.

Beth

 
Old 08-09-2009, 08:37 AM   #4
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Re: Celiac questions.

I am newly diagnoised Celiac in my 50's. I have been gluten free for 2 months now and dairy free for a year. I feel great.......The diet change is worth feeling so good again. I know I have had this for a long time. I feel like a new person since going off gluten.

Did they check your wife for Parasites? They should do an O and P test of her stool. Have they done a RAST blood food allergy test? They should test her with a blood test for milk, wheat, soy, citrus, pork, nuts, and all the basic foods. If not have it done. If all else fails have her do a gluten free diet and see if she feels better. I myself was shocked to find I had an allergy to milk.

I think Doctors forget the basics and go right into scopes and invasive expensive procedures before testing for the obvious. They especially underestimate dietary connections.

I myself stay away from gluten, all dairy and an additive called carageenen.

There are sometimes I miss certain foods but feeling good is more important to me. I eat 90% Raw....fruits, veggies, salads and protien drinks......I drink almond and rice milk, very little soy milk. I use agave nectar to sweeten. Bob's Red Mill Flour, Pamela's baking flour, Whole food brand flour to cook and bake with. Bob's makes a delicious gluten free oatmeal....I sweeten with agave or pure maple syrup. Look at a gluten free protien drink called Amazing meal...it is costly but has so many great things in it . I drink it everyday.

Addressing the cancer issue. I already have cancer not related to this. So far so good. I had a CEA ( intestinal) cancer test which was normal and my CA125 is just slightly elevated which is to get expected as I battle skin cancer.
I would worry about getting her immediate symptoms under control and try not to worry about the future yet. Easier said than done but try.

Good luck........Oleander

 
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