Advice regarding symptoms

[Kittycat28]

Hello all! 
I have found this website as I await celiac testing later in the year. 
I do currently have bile acid diarrhoea, and a recent MRI showed my ileum is inflamed but that’s all I have so far. 
I met with a dietician as I had lost 30kg of my weight in a short period of time. 

I had cut out all fodmaps (except gluten) and my diet consisted of cous cous, fish, toast, pasta, vegan sausages and oats. (Low low fat to ensure it’s not caused by bile acids). The dietician recommended cutting out gluten, and for the last 8 weeks I’ve never been ill, except for today.

I sound stupid but if you have the diarrhoea again after being fine would this rule out celiac? Does anyone else have bile diarrhoea? Do they maybe make each other worse? I’ve gone from maximum dose of Imodium to maybe 1 or 2 sometimes none which was massive for me. The improvement was that drastic. 

When cutting out gluten should you also cut out things that say they’re gluten free but the factory handles gluten?
 

Has anyone been in a similar situation? Can celiac even cause an inflamed ileum?!
 

My symptoms were passing blood with stool, weight loss, rashy/blistered hands, mouth ulcers constantly, severe right side pain (lower), lip swelling, hives and just general feeling like I have flu all of the time. 
 

Thankyou in advance for any advice, I really appreciate any replies. 

[Scott Adams]

First of all, I'm sorry to hear about your struggles, but it's great that you're actively seeking answers and support. It's not unusual to feel overwhelmed with such complex symptoms, but you're not alone.

Regarding your questions:

Diarrhea and Celiac Disease: Having diarrhea again after cutting out gluten doesn't necessarily rule out celiac disease. Celiac disease can cause various symptoms, and even after going gluten-free, it can take time for your gut to heal completely. Plus, there can be other triggers or cross-contamination to consider.

Bile Acid Diarrhea: It's possible for bile acid diarrhea and celiac disease to coexist and potentially exacerbate each other. Both conditions affect the digestive system, so managing one might help with the other, but it's also important to work with your healthcare team to address both issues specifically.

Cross-Contamination: Yes, for many people with celiac disease, even small amounts of gluten from cross-contamination can trigger symptoms. It's generally recommended to avoid products that are processed in facilities that handle gluten.

Inflamed Ileum: Celiac disease primarily affects the small intestine, but inflammation can occur in other parts of the digestive tract, including the ileum, especially if there is significant damage or ongoing immune response. However, other conditions, like Crohn's disease, can also cause ileal inflammation, so it's important to follow through with all diagnostic tests your doctor recommends.

Your symptoms (weight loss, rash/blistered hands, mouth ulcers, severe lower right side pain, lip swelling, hives, and a general feeling of flu-like symptoms) are quite comprehensive and can indeed be associated with celiac disease but could also be indicative of other conditions. To be screened for celiac disease you would need to have a blood panel done, and would need to keep eating lots of gluten daily until all tests are completed:

 

Hang in there, and keep advocating for your health. It's a challenging journey, but finding the right diagnosis and treatment plan will be worth it. Wishing you all the best in your upcoming tests and hoping you find relief soon.

[Kittycat28]

@Scott Adams

It’s just so confusing that one thing like celiac can overlap in symptoms with so many other diseases! 

Yeah, I think I expected if it was celiac then it would be a magical never having an issue again kind of reaction to the diet. Which in fairness I did for 8 weeks. But food labels are ridiculous, and even emailing companies I get responses such as “it might contain gluten”.  I think I have  risked too many “mights”. 

Thankyou again for your insightful reply, you have been really helpful 🙂

 

 

[trents]

Realize that for weeks/months leading up to celiac disease testing you must be eating generous amounts of gluten. The current recommendations are 10g of gluten (the equivalent of 4-6 slices of bread) daily for at least 2 weeks prior to testing and preferably, longer than that.

So, if you are anticipating a celiac disease blood screening, I would go back on gluten about a month before the blood draw. Same goes for the endoscopy/biopsy.

You probably know this already, but couscous is usually made from a variety of wheat (usually Durham).

Consuming things that do not intentionally contain gluten but are manufactured on factories where gluten products are also manufactured is kind of hit and miss. The amount of cross contamination will vary from product to product and from batch to batch. Best not to but a lot of us do consume things like that. It also depends on how sensitive you are to small amounts of gluten.

I also wonder if you have some vitamin/mineral deficiencies going on, Particularly, the mouth ulcers caught my attention in that regard.

Edited July 4, 2024 by trents

[Kittycat28]

@trents

Hi, sorry if my post was unclear. Prior to starting the gluten free diet I was eating couscous. I have now cut this out along with everything else that contains gluten to much improvement (barring today) .

Stupidly, I now realise that if it is celiac eating any amount of gluten would cause a flare and it’s not a case of in 6 weeks you should be fine forever. I’m not well versed with celiac as the drs thought it was IBD so went down that route for years.

Thankyou 🙂
 

[trents]

I heavily edited my previous post. Please review.

I also wanted to make you aware that there are third party celiac blood antibody test kits available for around $100 USD. You mentioned that you had celiac testing coming up later this year. That sounds like UK health system wait times. Are you in the UK?

At any rate, you might consider going third party test kit if you want sone answers sooner. I'm concerned about you waiting much longer to get tested because of your numerous health issues. Bloody diarrhea is concerning. 

[Wheatwacked]

On 7/4/2024 at 1:32 PM, Kittycat28 said:

It’s just so confusing that one thing like celiac can overlap in symptoms with so many other diseases! 

I like to think of it as amazing that one ingredient (gluten) can cause so many different symptoms.  I had improvement in 19 different symptoms in my first few years of gluten free diet.

On 7/4/2024 at 12:10 PM, Kittycat28 said:

I had cut out all fodmaps (except gluten) and my diet consisted of cous cous, fish, toast, pasta, vegan sausages and oats. (Low low fat to ensure it’s not caused by bile acids).

Choline is essential for fat digestion.  In 2011 the European Food Safety Athority authorised a number of choline-related health claims. It was concluded that a cause and effect relationship had been established between the following: (1) “choline is needed for lipids metabolism”, (2) “maintaining healthy liver functioning” and (3) “reduction in homocysteine levels”.  https://www.rockwallsurgicalspecialists.com/blog/symptoms-you-may-not-realize-are-being-caused-by-gallbladder-disease

Since restricting fat seems to help your symptoms, and your diet is choline deficient, supplementing choline or phosphatidyl choline may help.

It also looks like from your diet you may be vitamin B1 Thiamin deficient.  That can cause gastrointestinal beriberi with diarrhea.

These fact sheets from National Institutes of Health have a good list of foods.

Choline Fact Sheet for Health Professionals

Thiamin Fact Sheet for Health Professionals

Edited July 13, 2024 by Wheatwacked