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Confused...
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5 posts in this topic

Hi Everyone,

About 2 years ago, I started to get very ill. I had always had stomach problems growing up and all of the doctors I went to told me I had IBS. But, anyway, about 2 years ago I started having diarhhea everyday, very bad stomach pain, extreme fatigue, bone pain, muscle aches, anemia, mouth ulcers, chronic yeast infections, headaches, paleness, abdominal distention, etc. The list of symptoms goes on forever.

My pediatrician noticed that my Anti-Gliadin count was elevated and sent me to a GI specialist to see if I had Celiac Disease. The specialist didn't even bother running anymore tests and told me that I just had IBS. After seeing many doctors, I was finally diagnosed by an alternative doctor as having "non celiac gluten enteropathy." They also told me that I had many other food allergies, as well. I was then put onto a gluten free, dairy free, and corn free diet.

After being on this strict diet for several months, I wanted to have a confirmed diagnosis. So, I saw another GI specialist who told me to start eating gluten for 3 days and then he would perform an endoscopy and a colonoscopy. At the time, I didn't realize that this was too short of a time period. But, I went through with it and all that was found was mild inflammation of the duodem (sp?).

The next year, I saw another GI Specialist since all of my symptoms hadn't cleared up. He put me on a gluten free diet for 2 months and then performed an endoscopy. He said that the results were normal and that there was just some mild inflammation again.

This year, I had heard about a very good doctor that specializes in Celiac Disease. A few people I knew went to him and recommended that I see him. He put me on a gluten challenge for a little over 2 months and performed an endoscopy. After the endoscopy he told me that it looked like I had Celiac Disease, as he noticed a lot of intestinal damage. But, after the biopsy reports came back they were negative for Celiac Disease. Although, he saw flattened villi, and villi that looked as if it had partially grown back from being damaged, along with scattered leukocytes, focal cryptoplasia and doudenal mucosa this was supposedly negative for Celiac Disease.

Since being on the gluten challenge, I have had a return of many of my symptoms. I have chronic yeast infections, stomach aches, headaches, neurological problems, mouth ulcers, fatigue, bone pain, etc. The doctor said that it is my choice whether or not I want to go on a gluten free diet, although I don't have Celiac Disease. However, I am afraid to do this because my symptoms could just be coincidental. But, as I stay on this diet I seem to be getting sicker and weaker, and recently I have been getting bladder infections, yeast infections, and extreme thirstiness which is getting me worried that with my radical change in diet (from strict gluten free, to very heavily based on gluten) I am giving myself diabetes.

So, I was wondering what any of you think about my biopsy? Do you think that it could have been signs of early celiac disease? Also, I have proven to have Celiac Disease in the past on the Anti-Gliadin blood test (the less specific one) and the Enterolab results and I have the DQ-8 gene for Celiac Disease. Would it be worth repeating the blood tests to see if any of the numbers have risen since I have been eating gluten? I'm interested in everyone's advice.

Thanks.

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I feel, from what you have written, you have been diagnosed with Celiac. Genetically, biopsy (flattened villi), Anti-Gliadin blood test,and positive dietary response to the gluten free diet.

You should also look into getting tested for Diabetes, and other food allergies.

Laura

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The dietary challenge (getting worse when you go on gluten, getting better when you go off) IS a valid test in and of itself. Listen to your body! :-)

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I had all of the symptoms that you are experiencing. I have been diagnosed with celiac (one year ago). But with all your symptoms, I would try to go gluten-free for about 2 months and if you feel better and your symptoms disappear, then I would stick with the gluten-free diet. Believe me, you don't want to give your body any more damage. I also have osteoporosis and I'm 37 years old. I always chalked up my symptoms to being just allergic to certain foods. Or I would say that I ate something that didn't agree with me. I feel alot better since going gluten free, and I've even gained some weight (which was impossible for me before). I am also in the middle of trying to get my mother a proper diagnoses. She tested negative for the blood tests for celiac. She tested positive for the DQ2 celiac gene, AND she has alot of the symptoms that I had prior to my diagnoses. She is trying to decide if she should have the biopsy or to just go gluten-free and see if her symptoms disappear. Good luck to you, and I hope you feel better soon.

Kris in TN

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Thanks for all of your responses! I had to go to the doctor today because I was feeling worse and worse. It turns out that my blood sugar is very low and the took blood to check for other things, such as thyroid problems. The doctor also recommended that I go back on a gluten free diet.

Also, I was able to get in contact with the doctor who is investigating whether or not I have Celiac Disease. He feels that since my blood sugar is low I should get checked for Addison's Disease. However, he is also repeating the blood tests for Celiac Disease to see if any of the antibodies have increased since I have been on the gluten challenge. Also, he recommended that I resume a gluten free diet after the blood tests tomorrow morning.

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    • Hi Michael, That's quite a spike in blood pressure!  I haven't tested that myself and don't want to if it means I have to eat gluten.  Blood pressure testing to identify food reactions is something that has come up before.  It sounds like it might be possible but I don't know how much study has been done on it.  Probably not much since it is such a simple, straight forward idea. Welcome to the forum!
    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
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