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Many Questions - Feedback Appreciated
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Hello, I am a female in her early 50's. 8 years ago I was diagnosed with IBS. My major symptoms were diarrhea, bloating and cramps. I could go months without having any issues and then would have an outbreak. These outbreaks started getting closer and closer together, and the symptoms worse until I was pretty much in pain all the time and was afraid to go anywhere

About two months ago, after 3 particularly bad episodes with watery diarrhea (which I had never really had before) I realize that right before each one (for lunch, and the symptoms would start late in the evening) I had eaten something on a large bun (sub sandwiches & Carl's Jr. hamburger)

I had just seen something on Celiac disease, and I thought "no, couldn't be - the symptoms started so gradually, and then all of a sudden to have them all the time?" But I gave it a shot (as I had with lactose, chocolate and some other items I thought might be the issue in the past) and decided to try a gluten free diet.

After about 3 days the diarrhea cleared up. After 2 to 3 weeks, so did the cramping pain.

I then began to test myself by eating something with a tiny amount of gluten in it (like soy sauce on my rice for example) and like clockwork, in the late evening I would start cramping, and have diarrhea in the middle of the night. I did this test about 4 times, and had the same reaction each time, with the symptoms clearing up 2 or 3 days later after consuming no more gluten.

I have not seen my doctor yet for any testing, but have an appointment scheduled for the beginning of January. I know the biopsy test will not work correctly unless you have been eating gluten, but frankly, I am so uncomfortable that I am actually scared of eating it now.

So - my questions

1) Can you become sensitive to gluten so late in life?

2) Is it possible to have been able to tolerate some gluten and then suddenly be able to tolerate none?

3) Is it possible to have had only sporadic outbreaks which progressively worsened and got closer together until I was having symptoms all the time?

4) Any other advice, hints, words of wisdom are appreciated.

Thank You so much for reading this - tried to make it as short as possible :) - Dana

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1. Yes. Anytime.

2. Yes.

3. Yes.

4. Try to eat a little bit of gluten each day before any tests, if possible. (Beginning of January? 2 months? R-U-KidN-Me ? Any primary care doctor can request a celiac blood panel. Draw blood, send to lab, tah- dah. No need to wait that long, esp. if you have debilitating symptoms.) Then, no matter what the outcome, go on a gluten free diet and stick with it, as celiac tests miss a percentage of people with it, and there is currently no standard "test" for gluten intolerance.

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Yes to all.

I would have terrible "D" after eating pasta or burgers when we would go out to eat. I lived with it. The moment i went off of all gluten all my issues at the time ("D" and vomiting mainly) stopped.

I should note that i delt with this for about 9 years. I can remember the first incident of it happening. And if i didn't get "D" i'd get a bad bellyache. But it just had to be IBS right? Stupid catch all term.

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Just saw this on Facebook on The University of Chicago's page and thought of you.

"Approximately 20% of patients are older than 55 years when diagnosed with celiac disease. How old were you at diagnosis?"

You might want to look at the Celiac Center website for lots of info:

http://www.curecelia...ow-does-it-work

"I’ve heard that I don’t necessarily have to endure 12 weeks of eating gluten if I have a severe reaction. Is that true? How does it work?

The gut needs time to mount an antibody response that can be measured in the blood, which is why we recommend 12 weeks of eating gluten. If you experience symptoms immediately, it’s likely that the gut itself has quickly become damaged. In these cases, you and your medical professional could consider a shorter gluten challenge (3-4 days) and then have a biopsy.

Diagnosis is not an exact science, each person responds differently to the presence of gluten in the small intestine and the amount of time it has been there. Be sure to work with your medical professional to adjust your diet, if needed, during your gluten challenge."

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Thank You all for your responses. I was able to schedule the blood tests for the week after Thanksgiving. It sounds like that is the best place to start. Then will discuss the findings with my doctor in January.

Still doing very well on the gluten free diet with my intestinal pain completely gone. So I am sure that no matter what any test show or don't show, I will continue being gluten-free as it makes me feel so much better :)

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    • thank you for the info, its very helpful to hear from someone else who has it and knows a lot about it. When you say I may be eliminating one problem vs 3, what would you think the other problems could be? It's frustrating because I even buy Uldis gluten-free bagels and what not and I still find myself reacting sometimes to that, I don't use butter but just gluten-free peanut butter, but like I said I don't know for sure if its from that or maybe something else. I have read on this site about a couple others that have had issues with uldis breads so could be that. but like you said I guess it can also just take awhile to get better. I read the other day that a lot of throwing up can put stress on your small intestine which can maybe cause your body to react to dairy, do you know anything about that or if that's true?
    • Thanks for the reply!  Yeah, I really should have gotten testing done before the elimination diet.  I had asked my previous doctor, but she didn't want to do it.  I was transitioning to a new insurance and couldn't get a doctor's appointment for awhile, so I thought I would just do the elimination diet.  After all, it might not have been gluten.  (<--that was my thought process...) Hindsight is 20/20.  I felt pretty good during those 3 weeks gluten free, and was not expecting how bad it would be when I added it back in.  Anyway, I found a new doctor and I think she would totally be willing to test me again 9 weeks out. I think she would also be willing to order the endoscopy if I brought her research and really pushed for it. Now that I know how good feeling good feels... I just can't see staying on gluten for another 9 weeks.  I honestly don't know how I would survive.  Even if it's not Celiac, and it's ONLY the wheat allergy... it's making my life absolutely miserable. Thanks again for the reply!  I think I'll go in Friday for the blood test and take it from there.
    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
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