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Pre-diagnosis


koolmom1

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koolmom1 Newbie

Hi,

I am very new at this so forgive any errors I make. About a month ago due to my age I made an appointment with a GI doctor for a colonscopy screening. While I was there in my history he found that I had been on Prilosec OTC for about 3 years. I had a diagnosis of GERD and was able to control with diet and over the counter medications. He recommended to do a EGD just to rule out Barret's Esophagus. My son is 23 and has erosive esophagitis and IBS. My daughter who is 26 was diagnosed with IBS when she was 12. While doing the EGD he took a biopsy of small intestine and found Lymphocytic villitis which I am told is sometimes caused by Celiac Disease. The doctor asked me to have labs drawn. The results wer confusing to me. My Endomysium Ab.iga was negative and my Iga was 234 with 70-400 being the normal range. My Tissue Transglutaminase Ab.iga was 18 with 0-3 being the normal range. When the nurse called back from the office and wanted me to schedule another appointment with him to go over lab results she said that I was gluten sensitive. When I asked her what the difference was she said that they were treated the same. Does this sound like I have Celiac Disease or am I just Gluten sensitive. I have an appointment on Tuesday but it is driving me crazy over the weekend. I have already looked in to the diet and the really big thing that I am missing is something to make a sandwich out of for lunch at work. The breads that I have found are too thick and small for a sandwich. Ok for toast and the wraps that I have found are mainly disgusting. I really have learned allot reading your blogs and thought it might be a good idea to join in. You all are great!

Koolmom


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Jestgar Rising Star

The current definition of Celiac Disease is villus destruction, which can also be indicated by antibodies to gluten or other things in your blood. Your villi look bad, and you have antibodies. It seems very likely that if you continue to eat gluten you will destroy your intestine.

It's true that convenience is the biggest issue for some of us, but there are ways around it. I keep cans of soup at work, for example.

Hang in there, and accept that your diet is going to change. It's a long and sometimes difficult process, but I think that most people will say that celiac disease has made them much more aware of what they eat, and eating healthy.

koolmom1 Newbie

Thanks for the information. Does anyone know which soups don't have gluten in them? I heard some of the Campbell ones didn't but wasn't sure.

Jestgar Rising Star

You'll get more answers during the week, a lot of people read the forum during work :ph34r: , but I like the Progresso soups. You'll have to read the labels to be sure, but the chicken and rice, vegetable, and split pea(or maybe it's lentil? or maybe both?) are gluten free. Some of the Wolfgang Puck soups are also gluten free.

Darn210 Enthusiast

I agree . . . the sandwich bread is an issue . . .

Here are a few more (breadless) lunch ideas . . .

peanut butter or tuna/ham/chicken salad or rice cakes or corn thins (kind of like a rice cake but much thinner)

tuna/ham/chicken salad scooped up with baked tostitos

taco meat w/cheese scooped up with baked tostitos

chili (hormel is gluten-free)

baked potato (if you have a microwave)

salad (stating the obvious here) with ham or chicken

ravenwoodglass Mentor
Thanks for the information. Does anyone know which soups don't have gluten in them? I heard some of the Campbell ones didn't but wasn't sure.

If you go to the Campbells web site they have a list, and it isn't very large as far as the soups go. I believe (but I could be wrong) the cheddar broccoli is but I have never seen it in a store. :(

Progresso labels for gluten real well. If you have a Wegmans in your area they label all their gluten-free stuff. There are some breads that really are edible, some are mixes and some are ready made. My family likes the Kinnickinnick brand and the Gluten Free Pantry makes some great cake and bread mixes. It takes some getting used to and can be frustrating at first but you'll get the hang of it.

gfpaperdoll Rookie

CAUTION:

ONLY hormel chili WITH BEANS is gluten free

also - the same old thing - read the label...


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bumblemum Newbie

Sorry I don't have any advice about your workup/results. I am trying to figure out children's symptoms and test results. However, regarding:

I have already looked in to the diet and the really big thing that I am missing is something to make a sandwich out of for lunch at work. The breads that I have found are too thick and small for a sandwich. Ok for toast and the wraps that I have found are mainly disgusting.

This is what we use when I haven't baked any bread:

Glutino crackers (even our most 'selective' child likes these--Original only. The rest of us like their onion flavor also.)

Sandwich fixings all wrapped up in lettuce (a 'wrap')

Rice crackers w/fixings, tuna or egg salad (we love Edward & Sons vegetable flavor--even the kiddies!)

store bought gluten free waffles w/pb & j

For gluten free bread, I started out by using Bob's Red Mill gluten-free Wonderful bread mix. It has bread machine instructions if you use one. We also like Kinnickinnick (sp?) bread/rolls. Rolls very quick to make.

If you have a Whole Foods store nearby, their gluten-free bakery goods are pretty good, like raisin bread. We get 10% discount on cases of items we order + nickel off w/each bag brought back & reused.

I searched online for gluten free recipes and learned how to bake gluten (and casein) free. Found wonderful recipe blogs, like The Gluten Free Mommy. I use a lot of her recipes, but she also links to other wonderful blogs. These sources are invaluable to our family.

I also have learned how to just open my good ole red checkered BettyCrocker recipe book and substitute for any recipe. If you can bake (start by 'experimenting') on the weekend, you will get the hang of it. Perhaps you can bake more than one batch/loaf once you get the hang of it and freeze the extra for the next week. It doesn't last that long in our house, but I then rely on the above mentioned substitutes for bread.

(Peanut butter on?) Gluten free homebaked banana bread is yummy. I mix up a gluten free flour mix that has worked for things in my Betty Crocker cook book: 2 c. garbanzo bean (or 1 c. + millet flour + quinoa flour or whatever I have to equal 2 cups), 1c. sorghum flour, 3 c. corn starch, 3 c. tapioca flour. I keep this mixed up in a larger container on the counter, sometimes doubled. *Must add 1-1/2 tsp. xanthan gum for each recipe (for about each 1-1 3/4 c. of alternative flour.) This item is expensive, but goes a long way.* My banana bread, corn bread, etc. tastes like 'real' bread. Our neighbors didn't know the difference. Relatives have been fooled by my brownies if homemade & not from a mix, though Bob's Red Mill brownies from a mix are as good as any!

Oh, and on a chili note: Stagg has theirs labeled if gluten-free or not, at least last I checked. (Great chili recipes on those blogs, though!) It helps to have a cell phone in the grocery aisle, I've found. If the customer service rep doesn't sound like they are familiar with gluten-free needs, I don't buy. I have found Safeway and Costco reps take our number and check with their nutritionist/dietician, then call us at home. Walmart brand foods, (Great Value brand) are labeled if gluten free. (I don't normally buy food there, but was pleasantly surprised to find they label.)

Good luck. I need to post here asap to ask for answers myself. Seems everyone here knows more than our know-it-all-but-really-doesn't pediatrician. <_<

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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