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Diagnosis = Refractory Sprue

yogamommytrainer99

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yogamommytrainer99 Apprentice
yogamommytrainer99
Posted

Alright fellow gluten-free folks, I have been gluten-free for a year after a positive diagnosis via blood test and small intestine biopsies. No marked improvement after all this time. At least 4 more antibody test that have been sky high, despite doing all the correct things for gluten-free - reading labels, separate toaster, not trusting wait staff at restaurants that aren't gluten-free sensitive, etc. I have completed 1 month of steriods, no improvement and antibodies still high. The next steps are a hydrogen breath test for lactose intolerance, then a dr guided food elimination diet, then an enteroscopy to do more biopies of the small intestine and the jujunum (sp?).

Anyone with a similar experience?

Then what's next?

This is so time consuming, tiresome, draining, and frustrating!!!!

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tarnalberry Community Regular
tarnalberry
Posted

Are you already dairy free? It's not common at all, but in a few cases, it's possible for dairy to be the culprit of villi destruction.

yogamommytrainer99 Apprentice
yogamommytrainer99
Posted
  • Author

Going dairy free in 7 days...

ravenwoodglass Mentor
ravenwoodglass
Posted

Going dairy free in 7 days...

Why are you waiting 7 days? Going dairy free isn't going to effect testing for celiac and if you start to feel better you will know your doing the right thing. Also have you eliminated gluten from all your cosmetics, shampoos, lotions etc? Do you do arts and crafts or are you doing any remodeling in your home? Things like playdough, glues, paints, drywall compound etc can be an issue. Also do you work around flour or does anyone do a lot of baking at your home? You can be glutened by flour in the air.

yogamommytrainer99 Apprentice
yogamommytrainer99
Posted
  • Author

I don't know why I'm waiting... I'm not sure what to look for in terms of ingredients that are a dairy derivative. I do have gluten-free lotions, hair products, cosmetics, etc. I also am the baker of the family and I just stopped making things with wheat flour for the rest of my family. I'm not a crafter and when we do any home improvements I'm masked up... Looking forward to life without discomfort!!!

starrytrekchic Apprentice
starrytrekchic
Posted

Are you checking for cross-contamination at the factory with already prepared foods? You may be more sensitive, meaning you can't have gluten-free foods that are run on the same lines as gluten-containing foods. Things like chocolate and chips are particularly problematic. Try going through all of the foods you regularly eat and checking on-line and with the company to make sure they're safe.

Do you have pets that eat gluten food that you might be coming in contact with?

Do you take medication/supplements that haven't been checked out?

Do you drink flavored or instant coffee? Drinks can have gluten too.

Do you use a lot of replacement flours? There was an article going around recently about the high level of contamination in other flours, especially soy. Since you mentioned baking, I'd go completely flour-free for now, absolutely no substitutes, and see if that helps.

vbecton Explorer
vbecton
Posted

I'm awaiting my doctor's findings about Refractory Celiac as well. I go in next week. My blood tests are all negative, but my symptoms are worsening by the day despite eliminating everything from my diet (gluten, dairy, soy, corn, caffeine, coconut, legumes, nightshades). My GI symptoms are through the roof and I'm 3 months into this diet. I saw marked improvement the 1st month, but now it feels like a dramatic worsening.

I've done everything possible to avoid CC. New pots/pans, switched animals to gluten-free, new haircare, shampoos, etc..., all supplements gluten free, no pre-packaged or prepared foods (follow paleo diet), all new spices, only eat at home, etc... and all the above ;)

My doctor said steroid treatments for Refractory have shown only mild success. I go in next week for the pill camera findings, plus latest blood work. I'll let you know what my outcome is because your failure to get better sounds much like mine. The only thing that has gone away is my crazy low blood sugar and I'm very thankful for that!!

Oh and I just started digestive enzymes 2 days ago and either it's highly coincidental, or they are making some improvements in the help of digestion. My problem could simply be a lack of ability to break down foods. And yes, this is sooooo frustrating and tiresome that I could cry. :angry:

All the while, I'm trying to maintain a positive attitude as my 13 yr old is transitioning to gluten-free and if I show little improvement he'll say "Well, it's not working for you, why should I try gluten-free." I've been getting around that by making very yummy gluten-free food for him.

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dilettantesteph Collaborator
dilettantesteph
Posted

Did you see the recent Tricia Thompson study about gluten free grain cross contamination?

Open Original Shared Link

It could be that you are a more sensitive celiac and this contamination is bothering you.

It might also occur with other processed foods.

I am very sensitive and do much better with almost all non processed foods. I only eat fresh spices. Once they get dried and packaged, they do me in, though I am fine with ones I dry myself.

Dairy also bothers me. I hope you can get better.

verushka1974 Newbie
verushka1974
Posted

first, you should only be eating naturally gluten free foods: beef, fish, chicken, fruit and vegetables. DON'T use any processed spices. Here's an example on what my spices/seasonings are: olive oil, salt, garlic, onions, all kinds of fresh herbs, that's it! Try going back to basics, wholefoods and avoid dairy. See if you feel better by doing this. I've been on a gluten-free diet for 2 years and still react to gluten-free products, even gluten-free certified products! Good luck and hope you feel better soon. And one more thing...avoid eating out.

frieze Community Regular
frieze
Posted

I don't know why I'm waiting... I'm not sure what to look for in terms of ingredients that are a dairy derivative. I do have gluten-free lotions, hair products, cosmetics, etc. I also am the baker of the family and I just stopped making things with wheat flour for the rest of my family. I'm not a crafter and when we do any home improvements I'm masked up... Looking forward to life without discomfort!!!

sooo.....until you quit baking with wheat flour, you were continously contaminated by gluten......

dilettantesteph Collaborator
dilettantesteph
Posted

first, you should only be eating naturally gluten free foods: beef, fish, chicken, fruit and vegetables. DON'T use any processed spices. Here's an example on what my spices/seasonings are: olive oil, salt, garlic, onions, all kinds of fresh herbs, that's it! Try going back to basics, wholefoods and avoid dairy. See if you feel better by doing this. I've been on a gluten-free diet for 2 years and still react to gluten-free products, even gluten-free certified products! Good luck and hope you feel better soon. And one more thing...avoid eating out.

It's been 3 years and I'm the same. I agree completely. Also watch out for cross contamination when you buy these things. Sea scallops got me recently. I should have asked him to change his gloves before handling my scallops. But then again, what if the last guy didn't?

Lori2 Contributor
Lori2
Posted

I'm new on the board, so this may have been discussed many times before. What about the fact that most of our livestock are grain-fed? Does that have an effect on a gluten-free diet?

sahm-i-am Apprentice
sahm-i-am
Posted

I'm new on the board, so this may have been discussed many times before. What about the fact that most of our livestock are grain-fed? Does that have an effect on a gluten-free diet?

Lori2 - I was thinking the same thing as I am trying to figure out my worsening issues. This is a good question.

To think that gluten free flours are the source of my problems bewilders me - must investigate! Thank you for that information, not that I enjoyed reading it!

Wendi

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm new on the board, so this may have been discussed many times before. What about the fact that most of our livestock are grain-fed? Does that have an effect on a gluten-free diet?

No grain fed meat is not an issue. Gluten does not transfer into the muscle of the animals.

mommida Enthusiast
mommida
Posted

Now I have to rethink... Was I intolerant to millet and sorghum, or was it cross contaminated? I don't think I have the guts to try either again.

Kathleen Smith Contributor
Kathleen Smith
Posted

I don't know why I'm waiting... I'm not sure what to look for in terms of ingredients that are a dairy derivative. I do have gluten-free lotions, hair products, cosmetics, etc. I also am the baker of the family and I just stopped making things with wheat flour for the rest of my family. I'm not a crafter and when we do any home improvements I'm masked up... Looking forward to life without discomfort!!!

Yogamommy~

I have also been gluten free a year but my blood tests for antibodies did respond. My endoscopy showed active celiac still and I am nausous most days no matter what I eat. Also constipation. I am going to a specialist in NYC and she said not to freak out over "refractory" (she had sent my biopsies for special stain testing for refractory), anyway she said dont freak out it can still be lots of things. She is sending me for the breadth test too. She explained about our intestines being damaged it allows for all kinds of bad bacteria and microorganisms to grow. So not only is celiac a breeding ground for that, our bodies cant fight it and get rid of it like everyone else. And that can make us non-responsive. The treatment would be antibiotics and then there are also diests that help "starve out" the bacteria. So, wait to see what your breath test is (easier said then done, I know) I have been reading crazy about bacterial overgrowth (SIDO), Specific Carbohydrate Diet and something called FODMAP --- all to do with bacterail overgrowth.

Good luck to you!

yogamommytrainer99 Apprentice
yogamommytrainer99
Posted
  • Author

Yogamommy~

I have also been gluten free a year but my blood tests for antibodies did respond. My endoscopy showed active celiac still and I am nausous most days no matter what I eat. Also constipation. I am going to a specialist in NYC and she said not to freak out over "refractory" (she had sent my biopsies for special stain testing for refractory), anyway she said dont freak out it can still be lots of things. She is sending me for the breadth test too. She explained about our intestines being damaged it allows for all kinds of bad bacteria and microorganisms to grow. So not only is celiac a breeding ground for that, our bodies cant fight it and get rid of it like everyone else. And that can make us non-responsive. The treatment would be antibiotics and then there are also diests that help "starve out" the bacteria. So, wait to see what your breath test is (easier said then done, I know) I have been reading crazy about bacterial overgrowth (SIDO), Specific Carbohydrate Diet and something called FODMAP --- all to do with bacterail overgrowth.

Good luck to you!

I really appreciate your post. So nice to know that I'm not alone. Monday is the breath test. I am most afraid of having my diet be even more restricted. How do I eat, what do I eat, when do I eat. My most important job is to take care of my family - and that includes feeding my family. I can't expect my children to go dairy free! We live in the Mid-West - it's not easy to keep the gluten off the table for my spouse either! I am careful - I don't eat gluten, I don't cross-contaminate, I read labels, I talk to the pharmacist about supplements and medications. I'm ready for some answers and to feel well after a year of being bloated, diarrhea, stomach cramping, and malaise.

dilettantesteph Collaborator
dilettantesteph
Posted

In our household my son and I have celiac and my daughter and husband don't. For the first year we tried every precaution to avoid cross contamination to have a mixed household. My son and I kept getting glutened. Finally my husband and daughter went gluten free in the house. They are still free to eat gluten at school and work or at restaurants. Then my son and I finally had improved health. I guess that no matter how careful my daughter and husband were with their gluten and how careful my son and I were to try not to get their gluten, a crumb would get in somehow. That might be something that you will have to try at some point. My son and I are both very sensitive to trace gluten. It seems like celiacs who are less sensitive can manage well in mixed households.

Looking for answers Contributor
Looking for answers
Posted

I'm soooo thankful for this post - it solves a long-standing mystery for me. I went on vacation a month ago and when I came back I couldn't tolerate my coconut-milk based smoothies I used to have for breakfast. I went to the doctors and had him run an allergy for coconut (I knew I was okay with the brown rice/pea protein I was using and the avocado I blended in). The test came back with no indication of a problem with coconut, but I stopped eating it anyway because of the stomach cramps, etc. Well, now I know it's from the Carragen (I looked up the ingredients in So Deliecious Coconut Milk and it contains it). Mystery solved. I couldn't understand why I could eat straight coconut but was having trouble with the milk.

Same issue with Soy. I can eat Tempeh with no problem but Soy milks and ice cream, etc are out of the question. Stomach cramps galore, and moddiness like you wouldn't believe.

Thank you!!!

T.H. Community Regular
T.H.
Posted

The only thing that might have an impact is if the grain is genetically modified. Some celiacs seem to have more issues with foods that are genetically modified, and the genetic modification gets passed on into the meat that ate the genetically modified grains. The gluten itself, of course, doesn't make it through

I'm new on the board, so this may have been discussed many times before. What about the fact that most of our livestock are grain-fed? Does that have an effect on a gluten-free diet?

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