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Feeling Overwhelmed
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I recently had a positive blood test result and I am awaiting my biopsy results. I have spent the last month cursing my GI doctor for making me wait a month for an endoscopy. He wanted me to have a colonoscopy first then the endoscopy. Part of the problem was that I have never eaten a lot of gluten, maybe three pieces of bread a week or less, so my first blood test came back a weak positive 25 on the Gliadian AB IGA test. Then I had the colonoscopy and another blood test, this time the Gliadian AB IGA test came back a strong positive +41 but the other three tests came back negative. I ate one piece of bread a day. Anyhow, my symptoms have gotten worse everyday, at first it was bloating and a lot of gas, and then constipation interrupted by diarrhea, then diarrhea all day and at night. I have had lower body aches, congestion, dizziness, and lots of hunger, slight vomiting, stomach ach, and fatigue. These symptoms seemed worse when I had lamb or other red meats. Originally I went to my doctor because I was having constipation and sudden diarrhea attacks (running to the bathroom events).

It seems to me that I have a gluten intolerance and maybe celiac disease. In any case I pretty much have decided that I am giving up gluten. I have few questions, first I am worried that maybe I may have some other problem and second, I went today to Whole Foods and although I found gluten free foods, I had hard time finding things I liked. I am also lactose intolerant (self diagnosed) and after reading some of the posts I am wondering if I should get a milk allergy test. Another question I have is that I noticed that labeling is not consistent. Since my biopsy I have stopped eating gluten I feel slightly better. Feeling overwhelmed.

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Sounds like gluten is an issue for you.

I had the same problem as you at first. There was a lot of crappy tasting gluten free stuff and I was like o great I am going to have to eat this my whole life.

After a while, you will learn there are alot of good gluten free brands that are good it is just a matter of finding them. This site will definitely help you out on things to try.

Here are a few great tasting gluten free foods:

-Tinkyada pasta is loved by an overwhelming majority of people. It tastes normal

-Wellshire Farms Chicken Bites-fully breaded and taste like normal ones if you ask me

-Foods By George cinnamon english muffins

-Cybros rice rolls

-Kinnikinnick donuts/breads

Believe it or not we can also have alot of mainstream brands of food still. There is a list of brands that will list wheat,rye,barley,oats on the label or they will be safe-they do not hide anything even under otherwise questionable ingredients. This saves us a lot of time since alot of ingredients can hide gluten.

Also, the list of safe and forbidden ingredients and foods would help you. Here is the link if you do not have it. http://www.celiac.com/st_main.html?p_catid=12

Feel free to email me if you need any help... I am sure this site will give you tons of info. People on here are so supportive and knowledgable. It definitely gets easier as you go and it will become a normal way of life.

Also, a biopsy can rule celiac in but can not rule it out. The doctor could miss damage if it is sporadic or there may be no damage yet if its in beginning stages. So you may still have it even if the biopsy shows negative.

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Thank you for all your advice. I think I was having a little breakdown. I will use all your information.

:D

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It seems to me that I have a gluten intolerance and maybe celiac disease. In any case I pretty much have decided that I am giving up gluten. I have few questions, first I am worried that maybe I may have some other problem and second, I went today to Whole Foods and although I found gluten free foods, I had hard time finding things I liked. I am also lactose intolerant (self diagnosed) and after reading some of the posts I am wondering if I should get a milk allergy test. Another question I have is that I noticed that labeling is not consistent. Since my biopsy I have stopped eating gluten I feel slightly better. Feeling overwhelmed.

<{POST_SNAPBACK}>

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    • Your body has been used to ingesting and has been coping with the gluten in its systems.  DON'T PANIC because your body is doing it for you.   Seriously now, the medical field has a technological term defining when a system is used to working a certain way/routine.  When that is either disrupted or changed, it could take a while for the body adjust to a different way of doing things.  Another factor in the increase in symptoms could possibly be that your body is starting to "clean house".  It's trying to get rid of the amounts of gluten hiding out in all its nooks and crannies.  It is going to be a long term process.  It's like cleaning out a vacuum hose or other household item that is just caked with gunk.  The first cleaning gets rid of a large portion of the gunk and ick.  The subsequent cleanings gets rid of more and more ick but in lesser amounts. I thought I was going to go crazy those first few months, but things are a lot better now. (I am about 10 months gluten free).  I still have moments of brain fog and even episodes, but my body is getting closer (and more used to)  to having a cleaner "household item".  I know it's tough at first with the increased onslaught of symptoms, but hang in there.   You may want to keep a journal of all that you ingest or come into contact with for a time to track anything that could exacerbate symptoms.  (For me, my episodes are chemically triggered as well.)  If for some reason a few months down the road, you still have large amounts of symptoms it would be a good idea to visit your GP again just in case there something else that is going on.  
    • I would love some help! After 20ish years of being misdiagnosed with IBS, I was diagnosed with celiac disease (positive blood test for tTG IgA and positive duodenal biopsy) ~ 6 weeks ago. Of course I've gone completely gluten free, and I've been crazy paranoid careful not to ingest any gluten. I've also completely avoided all oats (even certified gluten free) and cut out lactose (due to transient lactose intolerance... because I don't have villi) . But now I feel WAY WORSE. I've had abdominal pain every single day, which ranges from mild aching to severe 10/10 laying on the floor crying and vomiting pain. I understand that it takes a long time to get better, but why would I get so much worse? My best guess is SIBO, but I can't imagine that it could cause such extreme symptoms, can it?  So my question to you fine folks is: did this happen to anyone else? Have you gotten sicker after you changed your diet? Is this normal?  For arguments sake, lets assume that I did not ingest any gluten to cause these symptoms... Thank you for your help!
    • Thanks very much Cyclinglady. Yes, it is Kaiser. I doctor said the GI think it is unlikely to be celiac deisease (he did not say how he came to this conclusion), but he would be happy to do an upper endoscopy for me. I did some look up online, this procedure should be low risk. Still feel a little hesitate while reading the potential risks :(.
    • I would suggest you test your daughter through a doctor. The Enterolab tests are not recognized as accurate or reliable by the medical profession. See this link from the Chicago Celiac Disease Center: http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Sorry.  Something is wonky with either my connection or celiac.com! Your results are not specific...borderline.    That is why your PCP should refer you to a GI for further celiac blood tests and a possible endoscopy.  I recognize the lab report form.  Kaiser?  If so, a PCP can not order a full celiac panel.  Only a GI can do so.  Why bother?  Because if you test like me, the TTG tests are always negative.  Request the EMA and the DGPS test via a GI.   Do not be fooled by a lack of abdominal symptoms.  I was only anemic -- no abdominal issues at all.  Constipation is a symptom.  Your PCP is thinking is just historical Classic celiac disease symptoms.   Please email your doctor for the referral if you think you might have celiac disease and want a solid answer.    
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