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Refractory Sprue
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37 posts in this topic

I think we're all very different. I can eat gluten-free oats with no problem, but I can't eat either Udi's bread or Larabars.

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And something that I never thought about but now have to when I'm feeding my kids: it can help to remember that 'gluten free' is really 'very low gluten.' Which means that if you eat a lot of it' date=' you can still get too much gluten for the day and start reacting. Kind of like eating too many low calorie foods can get you fat, ya know?[/quote']

I just wanted to say THANK YOU for mentioning this. It seems obvious, but it never crossed my mind!

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Re: the refractory issue...

I tested still positive on the blood tests for getting gluten at my 6 month check. My doctor at the time thought it might be allergens/intolerances that I hadn't eliminated yet. He said those can cause the body to not heal very well.

Hi T.H.,

As i was going through this post, saw your reply above and thought if you faced same thing what i am facing with my DD. Below is the thread that started to discuss the my DD's condition:

My link

Just one question, did you make any progress on your TTG levels after 6 months or no progress? Was just curious to find out, may be it could help in our case.

Thanks for your response.

Nannu

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I was DXed with Celiac in June with negative blood tests and strongly positive biopsy.

I went to a mostly whole foods diet, but still kept losing weight and felt crummy.

Through a food log I realized soy was a problem for me too. I omitted every trace. Still felt crummy and losing weight.

Went to new GI in Dec. and was rescoped. The initial finding was a lot of damage and obvious scalloping suggesting Refractory Sprue. At that time I stopped all dairy to see if it helped.

I was given the gene test, which was equivocal. I have a DQ2.2, which the new Gi says is NOT celiac. I was referred to the Mayo Clinic in Florida.

They did an extended endoscope looking for Whipple's disease, which came back negative. I was told if I had refractory sprue they would expect to see a higher amount of T lymphocytes. I had quite a high number of eosinophils which they think makes my damage seem more like an allergy of some sort? I have been blood tested for the main allergens and was negative on all.

I was taken off my allergy and cholesterol drugs and given a mild steroid (entocort). I am now being referred to the Mayo Clinic in MN.

The Mayo in Florida said I have something VERY wrong..but they don't know what. They didn't test for some of the other things I have read can cause flattened villi which is very frustrating! It may be a couple of months until I can get an appointment at the other Mayo?

I'm curious if you were tested for SIBO, yeast, parasites?

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I'm so sorry that you are having such problems.....mine pale in comparison. Since I'm only three hours away from Mayo in Jax, I had thought about going there. But if I continue to have problems, perhaps I'd be better off seeing Dr. Rupert in Atlanta. I have been tested for parasites after EXCESSIVE bouts of diarrhea. Turns out I have microscopic colitis and am on the same mild steroid as you, Entocort. Do you have excessive bruising w/it? I sure do.

What is SIBO? To the best of my knowledge, I've never been tested for that or yeast. I see my doctor again in mid-March. I've excluded Udi bread products and BRM products but I still haven't gained any weight. What kind of blood tests would you or anyone, recommend that my doctor test for? I'm at a loss. I had my first scope in 1998 and have had scopes every other year since then. This is the first time the scope indicated that I wasn't responding despite being fanatic with a gluten-free diet. I never knowingly cheat. As previously stated, I've been rather cavalier about ice cream, salad dressings and such but I ALWAYS check ingredients but I don't necessarily check for 'hidden' gluten.

Any recomendations regarding blood tests will be greatly appreciated.

Thanks again,

Linda in Savannah, GA

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SIBO is a bacterial overgrowth in the small intestine. Bacteria which is normally in the colon sort of "blooms" and comes upward where it shouldn't be. They usually do a breath test where they have you drink a sweet solution and test the gasses you breathe out at intervals. If they get a reading they know you have it.

I'm not sure how they test for yeast? For parasites

I had to do a stool sample test after I got home from Mayo and ship it overnight. They found I had a "weak" parasite that's not usually a problem for most people, but I was told I'm in such bad shape it would be wise to get rid of it. The Dr. said it usually comes along with other organisms, but didn't they didn't see anything else. I had been self treating for yeast, and had just done a 10 burst of Xifaxin.

For yeast, and SIBO it's a good idea to be taking a good probiotic every day. It will populate your gut with the good bacteria you need for digestion and crowd out the bad guys. If you've ever taken antibiotics for anything it can throw off the balance in your gut.

I was on Protonix for years, until I took myself off it in Jan. It reduces the stomach acid so much it doesn't keep bacteria and organisms under control like it should.

I haven't had the test for stomach acid. I think they use a pill camera to do that? If you've been on acid reducers, maybe you should be tested for that?

To be honest with you, I'm disappointed with the Mayo in JAX. It was very stressful making the trip, and the expenses for travel were pretty high. I don't think they did enough testing while I was there, and as a result I have a lot of unanswered questions? Other than the extended endoscope they just repeated tests I'd already had.

Entocort is actually made for treating Crohn's. It's supposed to stay in the intestine more than other steroids, so isn't supposed to have as many side effects? Maybe they will test you for Crohn's?

It's absolutely vital that you check things like salad dressings, etc. for gluten. Even just a bit can be enough to turn your immune system on, and that will cause you problems.

Good luck to you. I hope you get some answers.

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Yes, I've been checked for parasites. It took my doctor more than two years before he was able to diagnose me w/microsopic colitis. I've been on Entocort since then. I hate the bruising it causes on my arms and I'm sure it's not helping my osteoporosis. My doctor mentioned a probiotic during my last visit so I'll ask about that when I see him again. Thank you for your concern and the information you provided. Please keep me updated on your progress. How far did you have to travel to get to the Mayo in Jax. Since your visit wasn't terribly successful, I think my next stop will be Dr. Rudert in Atlanta. Please take care, Linda

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Yes, I've been checked for parasites. It took my doctor more than two years before he was able to diagnose me w/microsopic colitis. I've been on Entocort since then. I hate the bruising it causes on my arms and I'm sure it's not helping my osteoporosis. My doctor mentioned a probiotic during my last visit so I'll ask about that when I see him again. Thank you for your concern and the information you provided. Please keep me updated on your progress. How far did you have to travel to get to the Mayo in Jax. Since your visit wasn't terribly successful, I think my next stop will be Dr. Rudert in Atlanta. Please take care, Linda

I haven't been on the Entocort long enough to know what side effects I'll get. It's not as bad as Prednisone and steroids like that? I was on Prednisone years ago for pneumonia and started looking like a Budda. Was losing my hair, got a fat round face, and huge fat belly. I'm sure it helped damage my bones.

We live in Ohio, so the trip to Mayo JAX was 960miles. or about a 16 hour drive. We opted to fly instead.

Since starting the steroid and having taken the medicine to clear out the parasite I'm feeling a bit better. I'm taking a strong probiotic to rebuild my system from taking the anti-biotics too. You can't go wrong with Probiotics. They help with digestion and absorbing nutrients. You can't really over do them either. Your body just eliminates them if they aren't needed.

I also started taking a spoonful of coconut oil at each meal. It's a natural anti bacteria, yeast, and parasite fighter and has healing qualities. It's recommended for ailments of the digestive tract. It improves your good cholesterol too. I've been doing a lot of reading about it lately and everything I'm reading says it's very beneficial to the body, both inside and out. That might be something to look into too?

I'm now adding it to our dogs' meals too.

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Coconut oil.....hmmmmmmm. I'll have to try that out. We have an excellent natural food store in town; I'm sure Peter will know about it. Regarding steroids - I was on a strong round of them when I had a compression fracture in my spine when I was first identified as having osteoporosis. Entocort is no where near as toxic as Prednisone but it does cause bruising. I try to take as few as possible a day; my colitis seems to flare up and then subside for awhile....right now I seem to be in remission.

Yikes, going to Jax from Ohio would be terribly expensive - fortunately, Jax is only three hours from me so it is quite doable but as I said, I think I'll try Dr. Rudert in Atlanta if we can't find a satisfactory resolution - and by resolution, I mean NO steroids or cyclosporine.

Today I did a foolish thing......I FIRST checked McDonald's for the ingredients in their frozen mocha frappe. It appeared to have no gluten so I splurged.....big mistake. I've been paying for it all night. For me though, it's just slight to moderate heartburn - no nausea, cramping, diarrhea.....none of that. THAT'S the reason I didn't realize I was having symptoms = b/c my symptoms are so slight. At any rate....take frozen mocha frappes off my list of foods that I enjoy but cannot tolerate. Thank goodness for the suggestion of a food journal - it's really showing me where I'm going wrong. And I thought I was being so compliant. 98% of the time yes, but now I find there is NO room for error.

Feel better and good luck..L

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Thank goodness for the suggestion of a food journal - it's really showing me where I'm going wrong.

That has really worked for me too. I'm glad that things are looking up.

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Without a food log I think it would be very hard to figure out what foods you are reacting to?

So sorry you can't have the treat from McDonald's. Those little things like that can be enough to cause you big problems, esdpecially if you have several things that are not agreeing with you..and especially if they have even a tiny bit of gluten. The only thing from there I can safely eat is their soft serve ice cream. :(

I hope the Dr. in Atlanta can help you. Go in with a list of tests you've had. If you have copies of the results it might be a good idea to see if they'd like them sent before your appointment so the Dr. can look them over?

When we went to Mayo JAX we told them we'd be there one week. They gave me a schdule of tests and some were for after we planned to leave. In a case like that they have you go to the place where the test is given and you tell them you want them done as "walk in/stand by". You sit and wait and if they have a bit of extra time or someone is running late they squeeze you in. I had my MRI and CT scan done that way. I had to wait 2 hours for one, but the other they got me in right away.

They scheduled an appointment with a neurologist for March 14. We went and sat for hours 2 days in a row and I wasn't able to get in...so I think I'll mention that when mayo Rochester calls to book my appointment? :(

Please let us know how you're doing and how your appointment with the Dr. goes?

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That's not at all like my numerous visits to the Mayo in Jax. Sometimes I had to wait but my only gripe was moving appts. w/o enough advanced notice. As far as I know, I haven't had blood work done in a long while. I guess that will be my doc's next step. Can't remember if you were the one who asked but yes, up till now, my endoscopes have come back very healthy. Good luck to you as well and post what the MN. Mayo has to say. I'm so sorry you didn't have as good a decision and outcome as I did in jax.

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    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
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