Refractory Celiac?

[nicole356]

Hey,

I'm wondering if anyone has a refractory diagnosis? It's been almost a year and I'm still not feeling well and I'm wondering what everyone else's experiences are and if I should just accept that I might never feel better. Or has anyone else had additional diagnoses/ food intolerances that they can share? Or books/diets that have been especially helpful?

I know I'm intolerant to dairy and soy and I'm not eating raw fruits and veggies, caffeine, red meat, spices, and a variety of other foods that seem to make things worse. I've tried increasing fiber, decreasing fiber, enzymes, probiotics, and a number of diets for IBS including SCD but I just felt worse. I hardly eat any commercial foods that don't clearly state gluten free, I have my own toaster, and I clean the counters obsessively.

My main symptoms are alternating d and c but mostly d, cramps, gas, bloating, fatigue...

I went to a GI doc last year when I was first diagnosed and she said to just wait and I would feel better. I decided I waited long enough so I went back to my family doc who basically didn't know what to do. So now I'm referred back to the GI doc but I'm going to have to wait up to a year to get another appointment. Who said free health care is awesome? I have a dietician but she basically just tries to replace my gluten containing foods with salad which just makes things worse.

Thanks!

[Lynayah]

Have you had your vitamin levels and thyroid checked?

Also, are you absolutely sure you're not cross contaminating yourself? Things as simple as cast iron pans, cutting boards, etc. can do it . . . but of course you probably already know that.

Are you sure that everything -- ABSOLUTELY EVERYTHING that you put in your mouth is gluten-free, without assuming it is?

I found out that my toothpaste wasn't gluten free, and it really freaked me out! Who knew? Also, the flavored coffee I once enjoyed was a no-no.

It really pays to check everything . . . and just because a reference book says that something is gluten-free doesn't mean it is. Wal-Mart for example changes suppliers all the time. One month, a bag of frozen veggies will say "Gluten Free," the next month, the bag will say "manufactured in a plant that contains wheat." That one just happened to me this week!

Another one: A popular grocery store reference guide listed a Meijer brand product as gluten-free, but when I read the label, there was a wheat warning.

I am sure the reference book was right, at the time of publishing, but things change.

All this said, you are probably much better at going gluten-free than I was, and I'm probably just rambling here . . . but it is very easy to think that you are entirely gluten-free when you're not.

Just a thought.

Hugs,

Lyn

[Lisa]

Nicole,

Refractory Sprue is a very severe diagnosis. I don't think you want to go there, just yet.

I would continue to work with a dietician and be specific when you tackle an elimination diet. A food diary will be helpful.

[Lynayah]

Found this here: <a href="Open Original Shared Link disease=1&hl=en&ct=clnk&gl=us" target="external ugc nofollow">Open Original Shared Link

"A recent study used lactulose hydrogen-breath assays to show that small intestine bacterial overgrowth (SIBO) is likely a routine cause of non-responsive celiac disease"

Were you able to tolorate the yogurt on SCD? Did you make the 24 hour version suggested in the book?

[Lynayah]

You can also read about testing on the website here: https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

[burdee]

Hi Nicole:

8 months after I began abstaining from gluten, soy and dairy, I still had symptoms. Then I discovered that my digestive enzyme contained 'malt diastase' or barley. So I suggest you check all of your supplements, OTC products and anything you ingest besides food.

2 years later I still didn't feel well. So I went to a naturopath who had celiac disease and specialized in IBS symptoms. He believed IBS was not a disease but symptomatic of celiac disease, food allergies, intestinal bacteria, parasites or fungus. He tested me for food allergies (ELISA blood test) which diagnosed 2 more food allergies (beyond my previously diagnosed gluten, dairy and soy). He also gave me a stool test which diagnosed Klebsiella (a bacterial infection). Abstaining from my 2 additional allergies and treating the bacterial infection made me feel better. So I suggest you get a blood test for food allergies (Skin tests don't diagnose delayed reaction IgG or IgA mediated allergies.) Also find a doctor who can give you a stool test (preferably a DNA microbial stool test which identifies the exact 'bug', rather than toxins) for bacteria, parasites or fungus (like candida).

A year later I still had some symptoms. So I took another food allergy (ELISA blood) test for herbs and spices which revealed 2 more allergies to vanilla and nutmeg. Abstaining from those plus my other 5 diagnosed allergies reduced my symptoms and I felt much bettter for awhile.

However a year later my symptoms (constipation, bloating, cramping pain) returned. So I took another stool test which revealed I had a parasite (cryptosporidia) and high enough level of candida(fungus) to cause my symptoms. I treated both of those 'bugs', but only improved for awhile before I experienced worse symptoms. Another stool test revealed I had picked up clostridium difficile (one of the most rampant bacteria in hospitals). I hadn't been hospitalized by could have gotten that a my local clinic.

Now after treating c-diff for almost 7 months, I finally have normal stools (no diarrhea, no constipation), no bloating, excess gas or cramping intestinal pain. Recent studies have shown that older celiacs' intestinal lesions never completely heal. I suspect that because I was diagnosed with celiac disease later in life (my mid 50s) I had so much intestinal damage that I was prone to other food allergies and susceptibility to intestinal bugs.

Whatever, your age I recommend that if your symptoms persist, first eliminate all the sources of gluten or other diagnosed food allergens. Then just keep testing for and treating intestinal bugs. There is light at the end of the gastrointestinal symptom tunnel. Don't give up and endure unnecessary symptoms.

SUE

[Lynayah]

Burdee -- oh my gosh what you have been through!

Good point about enzymes. I had a number of digestive enzymes that I had to throw away -- no gluten listed on the label, but when I called the company they told me the enzymes were manufactured in a plant that also processes wheat.