Just diagnosed with Celiac! Scared and feel alone.

[Rhenriksen]

In 2023 I had a colonoscopy for blood in stool. Turns out that it was internal hemorrhoids but at the same time they found something near the terminal Ileum and took a biopsy of it. Pathology report came back as lymphocytic colitis. I was not having chronic diarrhea or other types of common symptoms so no treatment was necessary. Shortly after I started having excessive gas all the time, and diet didn't change anything, I've had floating stools forever and rarely does a stool sink. My stools alternate from cow patty like to constipation but have been more on the constipation side even though I go every day or 2. Last week I found out that my B12 was at 275 (3 years ago it was at 695). My folate was good. Iron/iron binding Saturation was good, ferretin good but in low end and same with vitamin D. I eat pretty clean and I've also been loosing weight (190 to 175 in about 2 months). I sometimes have mild discomfort in my lower right abdomen which to me coincided with the ileum part of the intestine (where b12 is absorbed and where malabsorption occurs) 

a few month ago I tested positive for celiac on a blood panel. I wasn't extremely high, only twice the limit. 
last week I had an endoscopy and colonoscopy done with random biopsies of each. I ate gluten equivalent to 1 slice of bread for 2 weeks prior to this exam.  I met with my primary yesterday to tell him that I retested my b12 and it went up to 375 (100 points) naturally in a week, but I was also going to start B12 sublingual daily to help. It was at this time that he said had my pathology report (I haven't seen it yet in MyChart Sutter and I haven't heard back from my GI) was conclusive of celiac disease from a biopsy taken in the deudondrum and that I had mild reactive gastrophy in the Antrum. Ironically, he said multi biopsies were taken of the colon as well as in the first part of the ileum and that no evidence of Microscopic Colitis was found. Although, that part is good news, a lot of my research and symptoms were leading me to Chrons Disease. I feel that my small intestine (mostly the Ileum) is compromised and I'm not sure how much celiac plays a role in that. I know that scopes can only go so far each way. Should I request or ask for video capsule endoscopy or MRI (I think it's called MRE) on the small intestine, or is that getting too crazy!?? prior to loading up on gluten for 2 weeks, I went gluten free for 3 months after the serum test and felt ZERO changes, still gassy everyday and floating stools all the time. Any advise, support or thoughts are greatly appreciated ! 
 

[trents]

Welcome to the forum, @Rhenriksen!

A few thoughts.

First, learning to eat truly gluten free is a real learning curve for most people because of all the ways gluten is hidden in the food supply that you would never expect and because of cross contamination. If you are still eating out you are almost guaranteed to be getting glutened through cross contamination. You may order gluten free food items but by the time they grill them and cook them and handle them with the same equipment that was used for wheated foods, they will pickup some gluten. Gluten can also be unexpectedly found in medications and oral hygiene products.

Second, most celiacs develop secondary intolerances to non gluten foods. The two most common offenders are dairy and oats. But soy, corn and egg intolerances are also common. And then there are strange ingredients that are added to most gluten free prepackaged foods like "xanthan gum" and "gar gum" that are hard to digest polysaccharides used to improve texture. One small study found that 50% of celiacs are intolerant to the dairy protein "casein". Almost 10% of celiacs cross react to the protein "avenin" found in oats (even gluten free oats). So, you might consider cutting out some of these foods that commonly found as secondary intolerances. I would start with dairy and oats. Add them back in if they prove not to be the problem. Sometimes these secondary intolerances dissipate over time as healing of the small bowel villous atrophy progresses.

Third, other bowel diseases such as Crohn's and IBS and colitis are more common in the celiac population than in the general population. So, you may have more than one thing going on. Autoimmune diseases tend to cluster.

 

Edited April 5, 2025 by trents

[Rhenriksen]

Thank you Trents! For the most part I have cut out Dairy as I drink Silk almond milk daily as an alternative!  I did have some corn Chex this morning with almond milk as that cereal is supposed to be fortified with vitamins and also gluten free so I hope that's ok! The only dairy I really have is a daily plain Yogurt which is lactose free and I only do that for the natural pre-pro biotics. Tried a slice of gluten free bread this morning......it was so so. I'll probably have another piece after my workout with some egg whites and avocado on top! Boy this stuff is hard, and I really want to try to do everything right because I have a little 2 year old girl to live for!  I also started taking Align Probiotics the day after my colonoscopy and I plan on only doing that for 30 days... I figure it can't hurt... 

[trents]

The problem with dairy isn't necessarily lactose which is the sugar component. It can be but the other issue and the more serious one from the standpoint of celiac disease is the protein casein. It can damage intestinal mucosa just like gluten.

https://pmc.ncbi.nlm.nih.gov/articles/PMC1810502/

[Rhenriksen]

So tough for me when my symptoms are asymptomatic. Only excessive gas, floating stools and occasional discomfort in my lower right abdomen. These symptoms do not change, regardless of how I eat too:( 

I'm sure that next week the GI doctor will discuss my findings and pathology results with me. It's at that time I may push for an MRI or CT scan of the abdomen. I prefer the MRI to avoid unnecessary radiation too. 

[trents]

Have you looked into SIBO (Small Intestine Bacterial Overgrowth)? 

Also, MCAS (Mast Cell Activation Syndrome)/histamine intolerance (they go together like a hand and glove). 

Both of the above are common in the celiac community.

[Rhenriksen]

I did a SIBO Test about a year ago, and I barely elevated on the Methane portion (max was 10 and I hit 13). Dr wasn't too concerned.  
 

[Rhenriksen]

Did a little more research just now and found out that even though the max methane should not exceed 10. It is normal to be around 3 and not rise. Again, I was at 13 so this does make me a bit suspicious. This was done back in May of 2024. I do recall being put on 14 day Antibiotic called Rifaximin but I'm really not sure if it made a difference, but if it did, then the problems still came back:( 

[RMJ]

If your celiac antibody tests are still positive that may explain the ongoing symptoms.  You might examine your diet and try to get those tests in the normal range before doing something like an MRI or CT scan.

 It took me almost six years to get all of my antibody tests in the normal range.  At first I thought I was eating gluten free by avoiding wheat, rye and barley in the ingredient list.  Then I made sure foods were labeled gluten free, one antibody was still positive.  Now if I eat processed foods I buy certified gluten free or foods labeled gluten free from companies with good reputations in the celiac community.