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10 Things I Hate About Celiac


Mtndog

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jerseyangel Proficient
Honestly, the thing that bugs me the most is trying SO hard and being So careful and still getting sick and not knowing why :(:angry:

This is so true :angry:;)

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HannahHannah Apprentice
This is so true :angry:;)

Absolutely! The hours you spend scouring your memory trying to figure out where you were glutened!

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Kyalesyin Apprentice
Absolutely! The hours you spend scouring your memory trying to figure out where you were glutened!

And so many times, the answer here seems to be 'work'...

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NoGluGirl Contributor
Honestly, the thing that bugs me the most is trying SO hard and being So careful and still getting sick and not knowing why :(:angry:

I think it's pretty valid to be darn angry when people don't ATTEMPT to understand OR they maliciously try to prove you're not sick. There's a thread on here about someone whose spouse put gluten in the food just to prove he/she wouldn't get sick. :(

Dear Mtndog,

I agree completely! It is terrible being obsessively careful, and still getting sick! I know the source of mine is usually my parents. They don't pay attention. Crumbs are everywhere! It freaks me out! :unsure: You never know what is going to hurt you.

I have been on that thread you spoke of. It is so irritating that people do such things. My parents just are not careful. They do not seem to accept the seriousness of this disease. They say, it is all I talk about! That is because it is what my life is about! They do not understand, nor do they care to! Even worse, these people try to tell us we are selfish for wanting to be well! :angry:

Sincerely,

NoGluGirl

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TriticusToxicum Explorer

-read the label

-decipher the label

-trust the label?

-trust the manufacturer?

Office mates "Donut anyone?"

me "no thanks"

Office mates "you still on that diet?"

<_<

No (real) pizza

No (good) beer

No (edible) burger buns/hot dog rolls

$13 for 4oz. of xanthan gum!! :blink:

eating out/traveling

licking the beaters...and then remembering you used bean flour ( :wacko: bleck!)

(i'm hard at work on the TP Dispenserator 3000XL hand bag attachment)

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Guest GrimTribe

10. Soothing my little guy when he found out he can't eat donuts.

9. Soothing my little guy when he found out he can't eat pizza.

8. Soothing my little guy when he found out he can't eat toast.

7. Worrying about possible Celiac Disease in my other 3 kids and me, and my sisters, and my brothers....

6. Slowly convincing my girlfriend the WHOLE household needs to go gluten-free to protect Steele from CC at home.

5. The freakin cost of freakin gluten-free food!

4. Soothing my little guy when he has a crying jag because he misses donuts..

3. Soothing my little guy when he has a crying jag because he misses pizza...

2. Soothing my little guy when he has a crying jag because he misses toast...

1. Having to tell my little guy all the things he can't eat.

I'm new at this, and I hate way more, but I'll save that for another time. Off to get some Happy Vibes rolling....

:( Raven

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Jo.R Contributor

How about the panic over every little twinge in the stomach area: "Have I been glutened, or is it a normal thing?".

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kbtoyssni Contributor
5. Not being able to eat a blue box of Kraft Mac and Cheese.

This is one very long thread that I haven't had to time read all of so forgive me if this is a repeat. I buy the blue boxes of Kraft, take out the cheese powder and use that with my own noodles. You're right, there's something about boxed mac & cheese that you just can't replicate so thank goodness the cheese is gluten-free.

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    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
    • Tanner L
      Constantly! I don't want everything to cost as much as a KIND bar, as great as they are.  Happy most of the info is available to us to make smart decisions for our health, just need to do a little more research. 
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