Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Pre-diagnosis


koolmom1

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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...


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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. <_<

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,915
    • Most Online (within 30 mins)
      7,748

    marcusdarrell1
    Newest Member
    marcusdarrell1
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Thank you, a little expensive but glad to have this source. 
    • Xravith
      @knitty kitty  Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday. I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better.  I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.