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Endoscopy Done This Morning; Doctor Now Thinks Celiac Disease After Tests Were Negative

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Posted 29 November 2012 - 09:02 AM

I had my upper endoscopy done this morning. My GI now thinks I have celiac disease after my blood tests were negative and the CT scan didn't show anything.

My duodenum (the first smart of the small intestine) was completely flat with no ridges. My stomach was red and inflamed which he told me was gastritis, and my esophagus showed signs of acid reflex. I actually got to see the pictures and I was amazed by what I saw. I knew something was wrong and I wasn't taking just lactose intolerance for an answer. Anywho, my GI took some biopsies and won't have the results until next week. He also stated that the lactose intolerance is caused by celiac disease, which I didn't know until a member of this board mentioned it in a previous post of mine. He told me in my last appointment that I was lactose intolerant, but I knew it was more than that because I don't have diarrhea, I'm always constipated. He wants me to start taking lactase pills before meals, start gluten-free and he wants to see me in 3-4 weeks to see how I am feeling.

I'm scared because I know this is will be a major life style change for me and I don't accept change very well. I know gluten-free food is very expensive and I keep wondering how can I afford this? I also have a 5 year old daughter who is always constipated but does not complain of her stomach hurting or show signs of bloating. Should I have her tested, just in case?

Can some one please give me advice on how to accept this and how I go about finding gluten-free foods? I know I can find them on the internet, but does anyone know if any chained grocery stores like Kroger has a good selection of gluten-free foods?
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Ollie's Mom

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Posted 29 November 2012 - 09:38 AM

Yes, please have your daughter tested asap! If she does in fact have celiac, it will be a good thing to get a diagnosis for her at such a young age. And even if her testing is negative, if you feel better on the gluten-free diet, then you should do a trial for her as well. (Also, even if your biopsy comes back negative, you should stick with the gluten-free diet for at least three months to see if there is any improvement in your symptoms).

As for the cost of food - OK, I see this as a common concern for those starting gluten-free. But trust me, your grocery bill will likely go down after you start. The key is to buy whole foods - fruits, veggies, meats, rice, etc and cook things up yourself. Basically, stay to the outer ring of the grocety store, where all the fresh stuff is kept. Don't get lured into buying gluten-free processed foods that act as replacements for gluten foods (cookies, bread, etc). Those can be very expensive and may not agree with you while you are healing (especially during the first few months). It took me a few months to get used to making meal plans for the week (breakfast, lunch, and dinner) and constructing my grocery list around the plan. Now it's second nature.

Also, always be sure to have some snacks with you at all times (nuts, fruit, Lara bars, etc) so that you will always have something to eat on hand.
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Posted 29 November 2012 - 10:23 AM


The above link is to an invaluable thread which will answer just about any question you have.

And let me echo Ollie's Mom in what she said. Personally, my grocery bill has gone WAAAAAAAY down & I'm loving it! :)
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.




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Posted 29 November 2012 - 11:19 AM

Some people make celiac out to be worse than it is. It is a disease, and having a disease sucks, we would all prefer to be disease free, BUT as far as diseases go this is easily managed. You don't need annoying medication and gluten free is healthy and a lot of people would be better off without it to begin with.

-5 of the 6 food groups are naturally gluten free
- All liquors and most wines are gluten free, there are dozens of great tasting gluten free beers to replace the gluten filled ones
- Any food you can think of will have a gluten free alternative, once you get the hang of if you can make awesome food that tastes just as good as its gluten counter part
- The world is more aware of celiac and non celiac gluten intolerance than ever before, there will be many restaurants in your area that will know about cross contamination and will offer gluten free foods on their menus
-Official celiac diagnosis comes with tax benefits to cover the higher cost of food

Put it this way, you have the best disease you could get, easily managed, naturally healthy, and medication free. Not only that, of all the medical and non medical communities I have been on, none have close to the awesome and supportive members we have here. You will trade recopies life stories, and make new friends in the process. Don't be scared, I was, we all were, and I now look back at posts I made months ago and how bad I was freaking out and think to myself "wow that was really an overreaction".
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Posted 29 November 2012 - 12:41 PM

Gluten free food isn't as expensive as slowly dying of malnutrition because the auto immune reaction is destroying your intestinal lining. If you want your kid to have a healthy and functional parent, you will do this. It merely requires one to make some substitutions on what brands of foods are purchased, tweaking a few recipes, and becoming a fanatical label reader. If you are lucky, you will not have a lot of additional food intolerances, or some really off-the-wall ones from a common ingredient in gluten free ingredients, even so, there are always work- arounds.
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