Newly diagnosed and maybe some type of protein intolerance.

[Tedro]

Had noticeable issues for 7 months including 3 trips to the ER for extreme discomfort. Every doc just said I had gastritis, take pepcid. This never changed a thing. Finally talked a doc into a referral to a gastroenterologist who I had to convince to do a scope and bloodwork to test for celiac among other things. It's like nobody believed me when I said I was sick. I got results back saying positive for an autoimmune disease but not which one. At that point I started a gluten-free diet based upon my own findings. The following week I check my insurance site and there's a message that I tested positive for celiacs. Never got a phone call. This was 5 weeks ago. The message said they suggest I maintain my follow up appointment which is may 19. No instructions on what to do, avoid, anything.  I am smart enough to figure this out thankfully.  So now 5 weeks into it I definitely feel an improvement. Been only eating things that say certified gluten free on the packaging. 

I was eating a breakfast protein kind bar in the morning but stopped because they aren't certified gluten-free. Also it seemed I would have hard upper gi grumbles when I ate them and I just figured maybe the oats were hard to digest. one of my symptoms was a hard gi grumble that lasted for hours after eating gluten. Eggs don't seem to bother me but I only have 1 or 2. Dairy doesn't seem to bother me. 2 sundays ago I had 2 burgers with no bun. 2 patties on the grill. slice of prepackaged provolone. Half way through the second burger it hit me and I felt horrible. 2 hrs later I am peeing every half hour and up half the night. Thought maybe the small amount of seasoning I used that was gluten-free got cross contamination.

This past saturday made a steak. Real butter in a clean pan and throw the steak on. 2 hrs after eating it same thing. Hard grumbles, peeing every half hour for several hours, and plain exhausted.

around 6pm yesterday....gluten-free turkey burger in the air fryer. 2 hrs later peeing like a racehorse, hard grumbles in my upper gi. I'm still feeling the effects today. I tried all day to find an allergist but the soonest appointment is in August. I have an appointment with a nutritionist the first week of june. 

Thinking back the worst reactions I've had  before diagnosis were general tsos which could have been breading or animal protein I guess. A fried fish sandwich. again could be Bread or protein. 2 burgers while on vacation this past winter. Also since diagnosis I made a porkchop with green beans and sweet potatoes and got the same sick which to me makes me think I'm having more of a reaction to meat or its protein than I am to gluten. gastro doc said from the biopsy there was mild atrophied villi but I know that could be from where the sample was taken and they could be gone not far away. 

I'm very frustrated from going gluten free 5 weeks ago and having similar reactions to what should be clean gluten-free food like steak or turkey. I know it takes a long time to heal. I know I have celiacs from the blood work. I just wonder if there is something else going on this whole time.

Has anyone had any similar experiences or have any insight? I am looking forward to my gastro appointment next week and have a list of comments and questions but i'm not getting my hopes up. I am by myself and am really struggling with all of this so I'm glad I found this community. I looked through a lot of posts and haven't really seen anything similar. Thank you all in advance.

[trents]

You might be having trouble digesting meat because of the damage to your villi. But what about gallbladder problems? Were those burgers, even the turkey ones, greasy? The odd thing is the "peeing like a racehorse" after consumption.

You say you have follow up GI appointment coming up. Please be aware if the GI doc wants to do an upper GI to specifically check for villous atrophy of the small bowel, the hallmark of celiac disease, going on a gluten free diet already may invalidate the results as it allows for healing to occur. 

[Tedro]

I already had a scope done and he said there were damaged villi. This follow up is to go over the bloodwork I already know the results to and the gastric emptying study I had done.  I won't say the burgers were not greasy but not bad. It even happens with chicken breast or tenderloin in the air fryer and that's not very fatty at all.

[trents]

Thanks for the clarification on the scope. This is what confused me, "gastro doc said from the biopsy there was mild atrophied villi but I know that could be from where the sample was taken and they could be gone not far away." I interpreted that to mean when the scope was done they didn't do a thorough job of checking the area that would be affected by celiac disease and were looking for other things.

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful: