Far Too Underweight, Possibly Refractory?

[S-J-L]

Hi everyone,

I haven't been on here in awhile, but i appreciate your opinions on the following.

I was diagnosed with celiac disese two years ago by blood tests and biopsy. I was told that i had subtotal villous atrophy.

I went fully gluten free, and did improve abit, but it seemed slow. I did have abit more energy, and my constipation went away within a month. Initially, my tissue transglutaminase went down from 164 to 40 within 6 months. However, for the last year and a half, this has stayed at 40 (tested about 3 or 4 times). For the last two months i was incredibly ill. Everytime i ate food i wanted to vomit, i woke up in the night wanting to vomit, constipation returned, and i actually began to vomit. I lost 3kg in two months and im now even more severely underweight-47kg, 5'8, female, 22years, bmi approx 16. I haven't changed my diet at all (except increasing calorie count), i had a lot of blood tests, which were all normal (except celiac ones), and had faecal tests for bacterial infections, but that was normal too.

I am currently waiting for another endoscope after seeing the specialist. The specialist wasn't too sure what was wrong from just talking to me but he didn't think it was another intolerance. He said that there is a slight chance that i may have refractory celiac disease. I know that this is bad if that's the case.

What do you guys think?

Does anyone know anything about refractory celiac, and what are the chances of me having it?

It really is impossible for me to gain weight, ive never had a bmi higher than 16.5/17 in all my life!

Im starting to feel better again, but was the last two months some sort of flare up?

[ravenwoodglass]

Forgive me if you have already done these things but... Have you checked all meds and supplements to be sure they are gluten free? For supplements unfortunately this means reading all ingredients carefully as wheat grass and barley grass are thought to be gluten free but are not. Did you elliminate gluten from toiletries and all other non food items like craft and home repair items like glues and drywall compound? Do you live with gluten eaters and if you are do you take precautions against CC? If your significant other is a gluten eater do they brush their teeth before kissing etc? Do you work in a job where you are exposed to gluten like in a bakery or with children? Do you eat out frequently? Do you consume distilled gluten grains in alcohol or vinegars? Not all of us react to them but some of us do. If you do consume them cut them out for a while and see if it helps.

You could of course be one of us who is a refractory celiac but please do a real close look at what and where you are eating and putting on your body as it is more likely you have gluten sneaking in.

[newgfcali]

Here's a link from the University of Chicago Celiac Disease Center about refractory Celiac. It lists some other possibilities for your continuing symptoms:

Open Original Shared Link

Hope you're feeling better very soon.

[S-J-L]

Thanks for your posts, yes i have eliminated all those sources of gluten.

For some reason there is a '-1' at the bottom of the post, how do i get rid of it haha

[newgfcali]

For some reason there is a '-1' at the bottom of the post, how do i get rid of it haha

Somebody probably hit the wrong button when replying to you. Apparently there's a rating system on this new format where you can rate posts with + or -. I don't think anyone uses it on purpose.

[GFinDC]

Hi,

It's nice that your specialist doesn't think it is another food intolerance but doesn't really matter. If lots of us have other food intolerances (and you can determine we do just by reading the posts and signatures on this forum) then it is not a stretch to think you could also. If he has nothing to base that on then who cares what he says? You can find out for yourself by doing an elimination diet and then you will know. Common intolerances are soy, corn, eggs, rice, fish, dairy, nuts, blonds, (oops I made that one up), etc. Check out some top 8 allergens lists on the web. I can't do dairy, carrots, soy, and other fun things. Like play a gee-tar. Just don't believe everything doctors say. They are just people. Do your own research and decide for yourself.

I didn't know about the +- rating system on this new forum software. I am going to click a plus for you, maybe it will get rid of the minus 1 thing.

Update: Cool it wurked! now you have a plus 2!

[S-J-L]

Hey, thanks everyone.

The problem is i don't even feel sick when i eat gluten, so its hard to figure out if i have another intolerance. Nothing in particular makes me feel sick. Apart from the past 2 months i don't normally have digestive upsets. And as i said im feeling better again and apparently i had no sort of infections.

Celiac disease was only investigated for me because of my inability to gain weight, and constant tiredness. Tht was it. I've been seeing a dietician every couple of months for the past 2 years and even she doesn't know what advice to give me anymore. I had even been getting extra calories by taking fortisip (hospital grade drink), but that doesn't give me extra weight either.

Even if you eat all these extra calories you can't put weight on if your intestine won't absorb it! This concerns me.

Does anyone here have refractory celiac? I want to know what your issues were.

I hope i don't have it but i'll have to wait a couple of months for my endoscope