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

New And Confused


kelley3737

Recommended Posts

kelley3737 Newbie

Hello, To make a long story short I was losing alot of weight and my doctor sent me for a colonoscopy and a endo. Before that he test me for proteins to celiac. While I was just about to go in for the colo-endo he informed me I came back positive for 2 out of 3 proteins for the celiac disease. I have no idea what that meant and just when I was going to ask I was knocked out for the procedure. Instructions after the test were to follow a gluten free diet and I was to have another small bowel test done. I have no idea what to buy..my Mother panicked and bought me a bread machine but I can't find the right ingredients to make the bread. What can I eat for now till I can figure this all out? I have tried to search for gluten free list and can't find one. I have been calling companies and some give you the info others wont. I have been living off of frito's, potatoes and vanilla ice cream for the past two days. I need help. I cant seem to get any info out of my doctor. With celiac do you lose alot of weight?? I am still dropping weight every week and I am down to 115. Just 1 year ago I was 180. I lose about 5 pounds a week. Is this something that can happen from eating gluten? I know that no one can give me medical advise but if someone has been in this position it would be nice to hear that things will get better. Does tessting for two out of three proteins mean I have celiac? My doc seems to think maybe something else is going on. Thanks for listing and any information is wanted and appreciated!!!


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi Kelley,

Yes, celiac can cause you to lose weight. Celiac damages the villi lining the small intestine which can cause poor absorption of nutrients. Many times an untreated celiac will have low vitamin levels because of malabsorption. Your doc should be testing your vitamin levels for B and D vitamins and iron also.

There is no need to go hungry on the gluten free diet. Take a look at the recipe section of the board and you will find tons of good food ideas. Try a forum search for "breakfast ideas" and you can get ideas for breakfast.

Simple whole foods are the best way to start the gluten-free diet. Eating foods you cook from scratch at home works well. That way you don't have to spend a lot of time reading labels at the store too. Taters, eggs, rice, green beans, avocados and things like that are good whole foods. In other words the food is whole, not chopped up, mixed up, sprayed with chemicals and jammed in a box or can.

Most meats are safe but you do have to watch out for meats with injected flavors or broths.

I suggest you leave out the gluten free baked goods to start out, they can be added in later. You need to also check all your vitamins and medicines for gluten.

Cross contamination is a problem for us. CC can happen when someone uses a knife to spread butter or mayo or some such condiment on a piece of gluten bread and sticks the knife back in the condiment container. Then the whole container is contaminated. So separate condiments marked as gluten-free only are a good idea. Also a toaster is a common source of CC and should be replaced or a new one dedicated to gluten-free only used.

Wooden bowls and plastic containers may be a problem as they are hard to really clean. Metal pans are probably fine but they should be boiled with soapy water in them for a while and then dedicated to gluten-free foods only.

You may find that dairy will cause you problems at first also. Sometimes that will correct itself over time as the gut lining heals. I suggest you also avoid soy as it is troublesome for some of us.

I'd ditch the Frito's also for now. You can do a google for any food item and gluten and find info on it fairly quickly. Also check this forum and search here as most questions have already been answered.

Welcome to our world of better, healthier gluten-free eating! :)

kelley3737 Newbie

Hi Kelley,

Yes, celiac can cause you to lose weight. Celiac damages the villi lining the small intestine which can cause poor absorption of nutrients. Many times an untreated celiac will have low vitamin levels because of malabsorption. Your doc should be testing your vitamin levels for B and D vitamins and iron also.

There is no need to go hungry on the gluten free diet. Take a look at the recipe section of the board and you will find tons of good food ideas. Try a forum search for "breakfast ideas" and you can get ideas for breakfast.

Simple whole foods are the best way to start the gluten-free diet. Eating foods you cook from scratch at home works well. That way you don't have to spend a lot of time reading labels at the store too. Taters, eggs, rice, green beans, avocados and things like that are good whole foods. In other words the food is whole, not chopped up, mixed up, sprayed with chemicals and jammed in a box or can.

Most meats are safe but you do have to watch out for meats with injected flavors or broths.

I suggest you leave out the gluten free baked goods to start out, they can be added in later. You need to also check all your vitamins and medicines for gluten.

Cross contamination is a problem for us. CC can happen when someone uses a knife to spread butter or mayo or some such condiment on a piece of gluten bread and sticks the knife back in the condiment container. Then the whole container is contaminated. So separate condiments marked as gluten-free only are a good idea. Also a toaster is a common source of CC and should be replaced or a new one dedicated to gluten-free only used.

Wooden bowls and plastic containers may be a problem as they are hard to really clean. Metal pans are probably fine but they should be boiled with soapy water in them for a while and then dedicated to gluten-free foods only.

You may find that dairy will cause you problems at first also. Sometimes that will correct itself over time as the gut lining heals. I suggest you also avoid soy as it is troublesome for some of us.

I'd ditch the Frito's also for now. You can do a google for any food item and gluten and find info on it fairly quickly. Also check this forum and search here as most questions have already been answered.

Welcome to our world of better, healthier gluten-free eating! :)

Thank you Mr GCinDC,

I will try and follow that advice. I didn't realize that food can become contanimated. This is going to be harder that I thought. I have two younger children who are not on a gluten diet but probably should be and the mixing is hard. I need to find a easier way about this. Thanks again for all the advice and the time to answer.

Reba32 Rookie

all the above adice is awesome! This website is a font of information, and really going gluten free isn't all that bad or daunting. You just have to learn to read food labels. That said, whole, natural fruits, veggies and meats don't have gluten in them. Most mainstream packaged foods will though, or they may be "cross contaminated".

Your best bet is when you go shopping to stick to the outside aisles. That's where the fresh whole and natural foods are. All the packaged stuff is in the inner aisles, and for the most part, you don't want that stuff.

btw, some ice cream brands could also have gluten in them, so be very careful and learn to read labels! The obvious ones are cookie dough ice creams, but there are others that may have "modified food starch" or other hidden glutens.

Most grocery stores these days will have a few items, or an entire section of gluten free packaged products. But venture into there in a couple of weeks, after you've learned a bit more, and you're healing on a whole foods diet. :-)

I myself am going to go look for the Gluten Free for Dummies book and/or the Idiots Guide to Gluten Free at half.com, I heard they're good reads :-)

redsidekick Apprentice

One of the best things about this site is that when you are in your "part of the world" what you are dealing with is so foreign and different than what you have experienced (or anyone else) it is helpful to discover that your not alone, and people here are willing to help. The weight loss and the tests you had/are having are all typical for those dxd with celiac.

If you have a question about a food or drink product, type the brand name of it in a search. You will be amazed that most items will be already be commented on. This site helped me more than meeting with a dietitian of what I could or could not have.

I was overwhelmed for the first several months. Still get frustrated if I'm on the road and get hungry, but if I'm home I always have something to eat.

Hoping the best for you.

LoserDave Newbie

Hello, To make a long story short I was losing alot of weight and my doctor sent me for a colonoscopy and a endo. Before that he test me for proteins to celiac. While I was just about to go in for the colo-endo he informed me I came back positive for 2 out of 3 proteins for the celiac disease. I have no idea what that meant and just when I was going to ask I was knocked out for the procedure. Instructions after the test were to follow a gluten free diet and I was to have another small bowel test done. I have no idea what to buy..my Mother panicked and bought me a bread machine but I can't find the right ingredients to make the bread. What can I eat for now till I can figure this all out? I have tried to search for gluten free list and can't find one. I have been calling companies and some give you the info others wont. I have been living off of frito's, potatoes and vanilla ice cream for the past two days. I need help. I cant seem to get any info out of my doctor. With celiac do you lose alot of weight?? I am still dropping weight every week and I am down to 115. Just 1 year ago I was 180. I lose about 5 pounds a week. Is this something that can happen from eating gluten? I know that no one can give me medical advise but if someone has been in this position it would be nice to hear that things will get better. Does tessting for two out of three proteins mean I have celiac? My doc seems to think maybe something else is going on. Thanks for listing and any information is wanted and appreciated!!!

at first yes you do loose a lot ,,, but it comes back.

i was diagnosed over a year ago,, and im just now understanding the connection between mal-absorption and my neurological issues.

ALSO,, IT'S NOT JUST Gluten that one has to watch it's a whole host of certain acid forming foods, even vinigar

hazeleyez682 Apprentice

Thank you Mr GCinDC,

I will try and follow that advice. I didn't realize that food can become contanimated. This is going to be harder that I thought. I have two younger children who are not on a gluten diet but probably should be and the mixing is hard. I need to find a easier way about this. Thanks again for all the advice and the time to answer.

"You Wont Believe it's Gluten Free" Is a great cook book you can get it at any Borders or Barnes and Knobles. It is very informative and the recipies are super easy. Good Luck!


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



Celiac.com Sponsor (A8-M):



Chrisco Apprentice

I just read the book "Living Gluten-Free For Dummies" by Danna Korn. It is so helpful. I am new to gluten free too, and the information in this book was extremely helpful. I love to bake and was so sad when I thought about all the things I couldn't bake anymore but the book had a great section of recipes and also explains how you can substitute ingredients in any recipe to make it gluten free.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,745
    • Most Online (within 30 mins)
      7,748

    Barbfh
    Newest Member
    Barbfh
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.