Daisy23

I tested negative, extremely negative not  one antibody found and I’m not IGA deficient.
Giving up gluten has def regulated my bowel movements.

I might be back at square one with everything else tho.  

@Scott Adams thank you!

My symptoms are all mostly the classics aside from the constipation. Any time I eat it, I know I won’t be going anytime soon. Hopefully this means I’m finally getting rid of all of it! After doing that challenge, I’m very much convinced gluten is a huge issue for me regardless of what the tests end up saying. Happy to never touch it again. 

I had my celiac panel done at the end of last week. It is not back yet, but I was happy that I could finally stop eating gluten. It has been 5 days since I had any and I went from severely constipated for weeks while doing the challenge to now dumping everything out of me.
 

is this normal after cutting out gluten? 

Looking for insight so that I don’t panic thinking I have c diff again when that test was negative the last week of February. If it continues for multiple days I know by default I have to test for that but thinking this may just be the gluten leaving for good. 

1 minute ago, KGB1819 said:

@Daisy23 yes! Don’t give up! I know a lot of people will say celiacs won’t effect your skin/face. But don’t give up hope. Especially if lymphocytes were found in your biopsy. I can say since being gluten free for a couple of months now, that it has definitely made an impact on the rashes on my face. So much so, that if I try to eat out and I think I got it 100 percent gluten free, the next day my face shows me I didn’t. Even my family has been able to tell the difference. I switched my primary care doctor, and when I saw him last month, and he found out I had celiacs, the first thing he actually asked me was if I struggled with skin rashes on my face. That was before I even told him I struggled with that before. So it does happen. I go back to my gastro at the end of this month for him to retest my tTg, to see if gluten-free has been helping. Feel better soon! (We also were hit with the flu this month. It’s no fun)

You’ve given me a lot of hope! Thank you so much. I’ve been told my face is probably this, that or the other. Even tho the rash is in other spots they said they couldn’t be from the same thing even tho they look the same. I lost hope in dermatologists. I likely won’t even ask for the biopsy just going straight to gluten free. So glad you’re doing better! If you’re up to it or remember, update your new levels! Happy healing!! 

Hi! @KGB1819
I know this thread is a few months old, did your face clear? I’m currently going through the same thing, lymphocytes found on biopsy, was supposed to get tested this week via blood but came down with the flu so now it’s next week. My face is really bothering me. The rest of my skin does too but this is visible to everyone and I hate it. not to mention scratching them open and it looks worse.   I plan to do gluten free regardless after testing but I know it can take a while for the skin to heal and I don’t want to get discouraged that it’s not helping if it takes a while to clear. 

@knitty kitty

I haven’t had that done. My son is 13 and has had random days of vomiting and fatigue. He seen GI 2 years ago and tested negative on the blood panel but no gene was tested. He recently started having those issues again so he is going back to children’s GI for a scope in may. My daughter isn’t biologically mine but she is blood related so it’s likely that if all this goes somewhere I’ll end up having her tested as well. We always assumed it was just cows milk protein that was the issue for them. But now I’m learning it can be both.  😕 

@knitty kitty

Thank you again for your detailed response!

It’s a good thing I don’t really like dairy! But now I’ll be watching the iodine and buying some niacin tomorrow. 
I haven’t spoke with my Doctor yet, my daughter has the flu so it’s been a weird week. I plan to call/message them Monday morning to see if they think it’s okay to go ahead with the tests. If they agree my plan is to do it Thursday. That’ll be exactly 7 weeks. Fingers crossed I can get it over with sooner. 🤞🏼

I’m undiagnosed as of right now. Coming to the end of my gluten challenge.

my “blisters” look like pimples, scabies, chickenpox,  even herpes. I have to bust these bad boys open to make the itching calm down. They can form in as quickly as minutes to hours and I always know beforehand where they are going to form. Once they break open there’s like a tiny hole on my skin.. as if  it was “ protected “ by the tiny bubble I just opened up. Sometimes they bleed, and every time they scab. I’ve also noticed these scabs when they are done sometimes flake off in a weird “gummy” manner. not always but sometimes. 
I had this on my legs, ankles, above my butt, shoulders, neck, head and unfortunately my face. I know face is rare and from my understanding most don’t think it’s that when it lands on the face, but it’s identical to the bumps  I had everywhere else. All showed up at the same time, it was symmetrical.  If I had them form above my right eyebrow, I knew the left was coming hours later in the same location.

I’ve never had blisters before, so I’m unsure of what a blister typically looks like or what it does. But I’ve seen 3 dermatologists who confirm this is dermatitis ( even my face) but never mentioned it in this form. Just some random dermatitis that I get to play the guessing game with creams and nothing works. 
I don’t want to post pictures, I’m not sure how to anyway lol but does this description sound familiar? 

I’ve been dealing with this for months. I’m tired of being passed along to the next skin specialist for them to  say “maybe this cream will help”  so I’ve stopped going. I’ve been searching since July to find anyone dealing with something similar just so I could explain it and see if anyone else is like me.  
 

9 hours ago, trents said:

Yes, with the amount of gluten you are eating daily it would not surprise me that your will have positive test results after 7 weeks. The Mayo Clinic time line calls for the daily consumption of  gluten in the amount equivalent to two slices of wheat bread (either whole wheat or white) for 6-8 weeks), though that standard has recently been called into question as maybe not intense enough in the daily amount to give consistently reliable test results. The more gluten consumption daily the better.

Thank you!

Totally ready for the challenge to be over with. I think after learning how much is in just one slice I’m likely to test positive. I’m basically all gluten right now. I wanted to be sure I wasn’t causing any weak positives and went all out. I’m feeling the aftermath, though. 

7 minutes ago, knitty kitty said:

@Daisy23, welcome to the forum!

Yes, white bread is fine for the gluten challenge.  A slice of bread can have between 2.5 to 5 grams of gluten.  

You may want to share the following information with your doctors and ask for testing sooner.  

 

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."

Keep us posted on your progress!

Thank you so much for all the info! 
I’ll be sure to pass this info to my GI.  This is all new territory for me. I went in for my procedure assuming damage was done from my past infections and was blindsided with results.
I will update my post when I know more. 
 

thank you again! So very helpful 

I had a colonoscopy and upper scope after having reoccurring c diff for close to two years. Celiac was the last thing on my mind, but the biopsy came back as elevated for something that was suggestive of possible celiac. 
Upon learning this and researching I believe it’s correct based on my symptoms. 
( skin rash, hair loss, lost 25% of my weight rapidly, bloating, rotating different bowel movements) also learned that there’s some studies that point to c diff reoccurring with celiac disease. 

I am eating tons of pizza and bread, but it is white bread. Now this might sound dumb, but is white bread  okay for the gluten challenge?  I can’t eat a piece of full wheat without wanting to cry. All my life I’ve avoided bread and pasta due to constipation and pain right after. I ate pasta 3 years ago and it landed me in the ER thinking my appendix exploded. Turns out, just constipated. Cut pasta out forever after that. 

week 4 constant diarrhea- thought c diff was back. Testing said no.

I am on week 6, and I’ve been constipated  for  one week now. I’m using miralax at this point and hating my life bc it’s so painful. 
does anyone think that maybe I would have a positive blood test after seven weeks instead of the full 8 based on pizza and white bread almost every day?Or should I add in full wheat bread for the remaining 2 weeks and push through for 8 total? 

Any advice?! Please and thank you. 
sorry this was so long.