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Endoscopy Done This Morning; Doctor Now Thinks Celiac Disease After Tests Were Negative
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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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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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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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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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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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    • Based on the information you have posted today, the most likely probable reason for your being ill is that you are getting glutened!  Here is a biggie....does your hubby brush his teeth prior to kissing you?  Seriously, it can happen, but going out to eat a lot.....that is just as bad!  
    • I got glutened last summer.  Heck, I do not even know what glutened me, but I suspect two products that my gluten-free hubby never consumed (he is my canary).  My symptoms were so different from when I was diagnosed (just had anemia then).  My GI thought I had SIBO or something else, but I asked for a celiac panel.  Yep, I had been Glutened!  Took me three months to recover and another three to regain lost weight.  Yeah, I picked up another health issue on the way (hives, rashes, swelling, itching, ab pain, vomiting, and fainting.)   I did not eat out for one year!  Only this summer, I did.  Was it worth the risk?  You bet!  Three weeks in Europe.  Fortunately,  7 days was on a cruise and Celebrity did a great job.  Italy was so celiac-savvy and I did my research and found places recommended by other celiacs in Spain, France and Poland.  If not, we bought cold food at the market and had a picnic.   I am home.  Will I eat out?  Probably not.  I have a busy Fall ahead of me (High School....football, marching band, volunteer positions, house projects, and work).  I can not afford to be sick.   Ah, I will eat out this Thanksgiving break.  My favorite restaurant is 100% gluten free in Tucson, AZ.   Maybe I will discover another gluten-free restaurant closer to home! 
    • I do est out occasionally - but not indiscriminately.  I am careful to choose places that under stand gluten free.  And places that the food is naturally gluten-free, helps, too.  Celiacs can't just eat something that should be gluten-free and hope it is.  We have to use some common sense and ask questions.  
    • You are right that the next step is an endoscopy, which still is the "gold standard" in diagnosing celiac disease.   However, for various reasons the endoscopy is not done because financial contraints  or long wait times (up to a year!), or too ill to proceed.   You have two positives.  You only need one positive to move forward.    The TTg tests  do not need to be positive for a diagnosis (which requires a positive on an antibodies test which you had and an endoscopy).  My TTg tests were negative and I only had a positive on the DGP IGA, yet biopsies revealed a Marsh Stage IIIB (moderate to severe damage. http://www.cureceliacdisease.org/screening/ Unless your PCP is a celiac expert (unlikely), I would insist on a GI consult.   Please find one who is celiac-savvy.   keep eating gluten daily until all testing is complete (biopsies done).  You never know if lab results are going to get lost.  Besides any celiac testing requires the patient to be on a gluten diet.  In the meantime, keep on researching.  Only YOU can be your best health advocate!  
    • I'm having some issues, that I didn't really even know I was having until the blood work showed them. Retracing my steps, I eat very strictly gluten free at home. I eat too much dairy (which is not only a problem for many celiacs, it is also not an anti-inflammatory). The husband and I have eaten out a lot over the last three years of my diagnosis. I guess I have not been overly cautious as I should have been, which I'm guessing could be my problems (although I am seeing the GI doctor tomorrow). So, I'm wondering if anyone here no longer eats out ever? Were you eating out and realized you were still doing yourself damage? 
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