Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

The Most Annoying Thing About Celiac Is...

GFreeMO

By GFreeMO
in Coping with Celiac Disease

Recommended Posts

GFreeMO Proficient
GFreeMO
Posted

The most annoying thing about celiac is...

Being glutened and having NO CLUE as to what zapped me this time!

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

Celiac.com Sponsor (A8-M):


  • Replies 59
  • Created
  • Last Reply
Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

never reaching a point where you feel good enough to start testing any foods, or know what your "glutened" symptoms are :(

mushroom Proficient
mushroom
Posted

The extra planning that eating takes :rolleyes:

thegirlsmom Apprentice
thegirlsmom
Posted

Not having accurate testing for your kids.

captaincrab55 Collaborator
captaincrab55
Posted

Knowing that my Mom was never Diagnosed with Celiac...

Diane-in-FL Explorer
Diane-in-FL
Posted

Finally living in a place with lots of fabulous restaurants and not being able to eat at most of them. :(

samie Contributor
samie
Posted

Always having to find out what we can eat at restarants

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

Celiac.com Sponsor (A8-M):


saintmaybe Collaborator
saintmaybe
Posted

The absolutely astounding lack of knowledge and coordination among practitioners in the medical community.

DonnaMM Explorer
DonnaMM
Posted

Feeling like the whole world is against me

beebs Enthusiast
beebs
Posted

Getting a diagnosis. All my specialists, my kids GI (who is a world renowned celiac specialist) and my GP all agree that I couldn't not have celiac, but because of the stupid rules on diag here I can't be diagnosed!! I hate that, drives me insane. Because when I'm in hospital and stuff its all like "I need gluten free" blah blah "haven't got an official diag...blah blah" and then their faces glaze over and they get that look in their eyes like a "we are dealing with one of *them* " looks and then I have to worry about wether they are going to take my gluten-free request seriously and am scared to eat the whole time. Arrrghhhh!

pricklypear1971 Community Regular
pricklypear1971
Posted

Getting a diagnosis. All my specialists, my kids GI (who is a world renowned celiac specialist) and my GP all agree that I couldn't not have celiac, but because of the stupid rules on diag here I can't be diagnosed!! I hate that, drives me insane. Because when I'm in hospital and stuff its all like "I need gluten free" blah blah "haven't got an official diag...blah blah" and then their faces glaze over and they get that look in their eyes like a "we are dealing with one of *them* " looks and then I have to worry about wether they are going to take my gluten-free request seriously and am scared to eat the whole time. Arrrghhhh!

Ever considered lyIng at the hospital? I would. Geez, that's a lot of stress.

beebs Enthusiast
beebs
Posted

Ever considered lyIng at the hospital? I would. Geez, that's a lot of stress.

I have a really bad affliction, I can't lie...or even fib ever, my mother thought it was the best thing ever when I was a teenager - she knew about everything at all times!!

Chad Sines Rising Star
Chad Sines
Posted

That you cannot eat gluten...c'mon...this was obvious. :)

Gfreeatx Apprentice
Gfreeatx
Posted

Chad, your last comment made me chuckle. :) For me, it is the lack of spontaneity. I am a real foodie and I miss walking through the city I live in exploring new restaurants without having a care.

pricklypear1971 Community Regular
pricklypear1971
Posted

I have a really bad affliction, I can't lie...or even fib ever, my mother thought it was the best thing ever when I was a teenager - she knew about everything at all times!!

Hon, you're never too old to learn :).

GuyC Newbie
GuyC
Posted

having to pick up regular pizza for my family and knowing I can't have any.

lucky28 Explorer
lucky28
Posted

That I have to be on guard all the time! :(

Googles Community Regular
Googles
Posted

The crushing depression(physical and mental)that comes when I get glutened (even from CC).

ThatGuy Newbie
ThatGuy
Posted

The smell of Wetzel's Pretzels. I've never eaten there but I like to stand in front of them for a few minutes and imagine tasting whatever that scent is.

lovesaceliac Newbie
lovesaceliac
Posted

That we can't even trust the "gluten free" options at most restaurants. Well meaning friends say, "such and such a place has gluten free pizza now!" Not a chance my super-sensitive celiac husband could eat it safely. Stupid cross-contamination.

TTNOGluten Explorer
TTNOGluten
Posted

Feeling helpless, depressed, and tired of being in constant pain, enough so, that I have a hard time even enjoying my own beautiful children and not being the father I should be

Katrala Contributor
Katrala
Posted

Pseudo-Celiacs

beebs Enthusiast
beebs
Posted

Pseudo-Celiacs

Hate that! I just had an argument with someone today who says that her whole family has coeliac but none of them has been tested (along with a myriad of other medical complaints)- then she tells people on the internet just to go gluten free without testing. Drives me mad. Its like she wants her family to be coeliac. Whereas my family have been in sickness hell for years with two sick children in and out of hospitals and heaps of tests, borderline results. A) I would never dream of just deciding its Coeliac (although I think it is) and B) I would never tell anyone not to get tested. What if its something else? Something worse that is making the kids sick???

mushroom Proficient
mushroom
Posted

But what if it is gluten intolerance and you can make them better just by not giving them gluten? I would never tell someone not to get tested, but I would never tell someone to poison their child just for the sake of a stupid test which might not be accurate and which may not mean that it is not gluten that is the problem either. Adults can make up their own minds whether or not to poison themselves, for testing, but forcing your kids to be ill is a different question in my book. There are no accurate tests (yet) for ncgi.

beebs Enthusiast
beebs
Posted

But what if it is gluten intolerance and you can make them better just by not giving them gluten? I would never tell someone not to get tested, but I would never tell someone to poison their child just for the sake of a stupid test which might not be accurate and which may not mean that it is not gluten that is the problem either. Adults can make up their own minds whether or not to poison themselves, for testing, but forcing your kids to be ill is a different question in my book. There are no accurate tests (yet) for ncgi.

No, she was telling people even before going gluten free to not get the blood test. No one is saying do a challenge. We are talking about chronically ill children as well - so what if it isn't even anything to do with celiac - or what if its celiac and something else? My son had a borderline celiac tests - he is much much better gluten free - but it has become clear that there is also something else going on. How would you ever know any of that with no testing. All I was saying is do the blood test and if its neg then go gluten free - but do the test first. Also - she keeps going on about how Celiac is an allergy etc. She doesn't know anything about it and yet she is giving advice on it? There is nothing worse than people talking about anything medical when they know nothing about it.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,836
    • Most Online (within 30 mins)
      7,748
    Art Glassman
    Newest Member
    Art Glassman
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Guidance on next steps after the lab tests

      By knitty kitty · Posted

      @ABP2025, Here's some studies and articles that will help you learn more about thiamin and all... I will write more later. It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ and... Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/      
    • DayaInTheSun
      Being a burden to family/friends

      By DayaInTheSun · Posted

      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      Years of testing - no real answers

      By Kiwifruit · Posted

      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      9 Year Old test results - help interpret

      By trents · Posted

      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      9 Year Old test results - help interpret

      By Gill.brittany8 · Posted

      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
×
×
  • Create New...