r/Celiac

My daughter got her first blood work done since her diagnosis, and apparently her vitamin d is low. So the gastroenterologist prescribed some since that way it should be easier to get some gluten free. (I know, I’m naive.)

Just got it filled. When I got it, I asked the pharmacist if she had verified that there’s no gluten as my daughter is celiac. “Oh, no, I didn’t know.”
(Note: when I dropped the prescription, I made sure her file was up to date with that information.)

So she goes to check on the computer, and it’s unclear. She tells me we could call the company to ask, but is obviously not willing to call them. (It’s her job?)

She remembers she had the box, so checks on the box: “oh! It’s Halal, so there’s no gluten!”

WTF, lady!?
So I explained that halal has nothing to do with gluten.

“But how bad is her reaction? Does she get anaphylactic shock? Because it wouldn’t be much, so she might be fine.”

I told her it makes her sick and decided to avoid the whole “it’s not because you don’t have symptoms that it’s ok” rant, but I’m so annoyed.

I wasn’t going to say anything about her not noticing the celiac disease, but when I left I asked her to put gluten in her allergies so it doesn’t get missed again.

Also, I’m not even that worried about the vitamins, but it’s the principle of it? You’re a health professional! You should know better! I kind of know her boss and now I’m considering asking if I can help him train his staff.

Hi everyone,

So I recently got bloodwork and my iron saturation and ferritin were on the low side. I see thats normal for people with Celiac.

My question is.. I had bloodwork taken like a year ago ( or a little longer cant remember) and my bloodwork seemed fine.. now I'm 2.5 months into GF diet and their low. I dont feel like I have major iron symptoms except a little fatigue, constipation and heavy periods for now.

Think ita a coincidence and its from celiac damage ? Or could be the diet is causing low iron?

Any helpful insight would be great! Will be talking to my PCP doctor too but figured I'd ask the experts on here!

Thanks..

Have you guys seen the clip of host Alex Cooper and supposed comedian Robby Hoffman making incredibly ignorant comments about celiac disease on the Call Her Daddy podcast today? They imply that celiac disease is a recent trend and that people are faking it. They joke about how they want to actually see someone have a reaction to bread and also keep referring to it as an allergy.

Time stamp: 32:00

What are your thoughts on their commentary? It’s incredibly annoying to hear such ignorant statements from people who clearly don’t understand the severity of autoimmune diseases. Also, aren’t jokes supposed to be funny? I am struggling to see the humor in that entire exchange.

For those of you who haven’t seen … happy Celiac awareness month to us?!
This shit is EXHAUSTING

I live in a small town and the local Chili’s is one of the few options for me. They have a gf QR code and I’ve never been glutened there.

This is just a post to give you a laugh. I asked for the QR code for the gf menu up front (I go so seldom that I forgot that it is available through the digital thing on the table). A new older waitress heard my request and looked right me and said, “Oh, you just can’t have bread.”

Thank goodness she was there. lol

I’ve been eating gf for 3 years suspecting that I have celiac. At first I was happy without a diagnosis because I thought it wouldn’t change anything anyway - I would just continue to eat gf as if I had it.

However, my symptoms are so severe now when I suspect I’ve been glutened. I try to be really careful so it’s hard to point to exactly what may be glutening me in these circumstances but I usually have a questionable restaurant or mistake to point to.

But a fear remains that if I don’t actually have celiac I could be dismissing symptoms of another concerning health condition as glutening symptoms.

Anyway, I’m terrified of a gluten challenge and if my symptoms are connected to celiac then the gluten challenge would make me unable to work for its duration.

I do get what I think is celiac rash and my doctor has agreed to refer me to a dermatologist for a hole punch biopsy to see if it is in fact dermatitis herpetiformis.

But from googling it doesn’t seem like this is a for sure sign of celiac - I keep seeing “highly likely” that you have celiac if you get a positive test for DH.

Anyone have experience being diagnosed this way? Would you see it as a clear cut yes you have celiac?

Recently diagnosed here along with DH. I found myself out of my office at lunch today and I went to Chipotle as the safest bet. I haven't asked for an accommodation before so I wasn't sure if I would ask them to change gloves, until I watched every single employee put their thumbs and hands on the flour tortillas. As the first one asked me what I wanted, he had both his hands palm down on the flour tortillas. I asked him if he wouldn't mind changing gloves because I had celiac. As he changed them his co-worker came over and asked him if he was familiar with their protocol, which was fresh gloves and one person taking it all the way down the line. I was impressed - he did a great job.

Im planning on taking some one day but is it a scam or something

Seemingly out of the blue, I started dealing with chronic constipation that lead me to be hospitalized. I got a full blood panel from a GI doc, as he thought it was my thyroid. Turns out, I may possibly have celiac, and I am getting an endoscopy in a few months.

I always thought people with celiac dealt with diarrhea! And I’ve never had any issues with gluten my entire life. Unfortunately, I have to wait awhile for my endoscopy, but I’m going to attempt gluten free to see how I feel.

Those who found out they have celiac through constipation - what were your other symptoms? What does it feel like after you have gluten? I cried my entire way home from the doctor because I feel almost sort of devastated, because this could be a lifelong thing if I’m truly diagnosed. But I want to feel better. I want the abdominal pain to stop. I want the lethargic feeling to stop as well.

I've been gluten free for 4 or 5 years and have been strict about it. I thought I had uncovered all possible sources of gluten in my home-- dog food, skincare, oral care, nail polishes, medications, etc. I don't go out to eat like..ever. If I do, I only eat at celiac safe establishments and have my gluten detection dog verify safety. And yet.. my tTG-IgG is currently 8.

Could that just be my "normal" range, even though it's slightly elevated? I see my GI in September (first available appt), but I'm trying to figure out how to move forward with this most recent blood result.

Any thoughts? Opinions? Any insight appreciated because I feel like I'm going crazy.

Last night I was talking to my sister who lives 1 state over. She was telling me how my niece had minor blood in her stool and after blood drawing, test,etc they believe she has celiac.

My sister was crying because that is going to be something she has to deal with for the rest of her life. She has to have a special diet, substitutions, etc. and of course she is upset that she has been in discomfort for the past few months.

Now I'm trying to find ways i can help. I have been assembling recipe links, looking and documenting stores and resturants that have gluten free options.

Talked to my wife and we are making sure we have gluten free snacks at our house when she visits (we r babysitting for a week later this summer), etc. Pretty much I'm trying to make sure this is going to be as easy as possible for her.

NGL im devastated for her. I know this isn't a life-threatening disease or anything but still...it's a lot, especially for a 4-year-old.

How else can I help?

I was diagnosed with celiac about eight months ago. I had a normal ttg result in December. I get fatigued after eating. I was talking to the gastro physician's assistant, and she said this isn't common with people recovering from celiac, but it seems like I've heard others talk about this problem. Is this something others are experiencing, or have experienced after diagnosis? Is it something you see discussed?

Does anyone have a child that is never hungry? My child was diagnosed 7 years ago and is very good about monitoring food. His numbers are always super low, so he’s not getting glutened. He’s just never hungry. If he’s home alone he will go all day and not eat. We have to remind him to eat. He will get hungry once he starts making food or sitting down to dinner. Just wondering how common this is with Celiac disease, if at all.

Does anyone else get really bad gas from eating gluten free breads and foods with all the gums

A colleague said she baked a gf cake and gave me to try it. She assured me everything was GF and I didn’t think that much about cross contamination, now I have stomach pains and nausea. I haven’t eaten anything else and at home everything is GF. Can the baking utensils contaminate the cake?
Have you experienced something similar?