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Refractory?
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So I've only been able to eat white potatoes, white rice and seeds for the last few months without violent pain. I'm about to try chicken stock, my first bit of meat in over a decade. My doc was originally suspecting Small Intestine Bacteria Overgrowth as the cause to this severe malabsorption, and because the tests for it aren't too reliable he decided to do a trial of antibiotics. If they made any bit of difference it would be evidence of SIBO, if not on to the next suspect.

I have Lyme Disease and I've been (successfully!) following an herbal protocol for the Lyme the last few years, but the goal with herbal protocols for Lyme are more about boosting the immune system and letting it suppress the bacteria, so I knew this experiment with antibiotics would stir / anger the Lyme since that bacteria is still (and probably always will be because of how long ago I contracted it) in my body. Boy was I right. If I had any doubt that I have Lyme disease that doubt was completely eradicated when I started the antibiotics. I had an especially horrible herxheimer reaction (worsening of symptoms as massive die-off of bacteria overloads the body with toxins) that scared the living shit out of my boyfriend. As expected, most my old lyme symptoms came roaring back (limb numbness, migraines, shoulder pain, muscle pain, tinnitus, abdominal cramps/pain, muscle spasms, brain fog, anxiety, depression, fatigue, nausea, back pain, black outs, tremors, etc etc) to a degree so unbearable I got suicidal. The pain just broke me in half. I somehow withstood the 2 weeks and came out on the other end with no change to malabsorption issues. I can still only eat potatoes, rice and seeds. (and am now in a world of lyme hurt)

So, doc has ruled out SIBO. He's moving on to tests for refractory celiac. I'd never even heard of this and what I've read isn't good. Can anyone tell me more about it? Is the testing accurate? From what I've read prognosis usually isn't good so I'm obviously worried.

(And before you can suggest it, no, I don't think there's any way I could still be ingesting gluten without knowing. I'm only eating potatoes, lundberg white rice and david brand seeds. All my supplements I've called/triple checked on gluten content and even had 2 nutritionists look through them. All my beauty products were long ago replaced.)

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From what I know, refractory celiac is when you don't respond to the gluten free diet. My GI doc thinks that in most cases it is because you are reacting to trace gluten. I see that you say that isn't the case for you. I hope that your doctor finds some treatable condition and that you can get better. I can tell you that there are foods in your diet which I thought gave me reactions. I can also see that with so few foods, you can't eliminate anything. If I were you, I would be trying to find some safe food to add to your diet. Your health would probably improve with a more varied diet. Also, that way you could try some elimination/challenge studies without starving.

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I thought treament for Lyme was a 3 month course of antibiotics? Maybe I am wrong about that. Below is link to a thread on lyme.

http://www.celiac.com/gluten-free/topic/36163-the-lyme-disease-thread/page__hl__%2Blyme

Yes, refractory celiac is when the gut doesn't heal on the gluten-free diet. But since you have Lyme it could be affecting your healing. That would be more of a lyme issue than a celiac issue. If you search the forum there are quite a few threads on lyme.

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You say you have been following an herbal protocal for treating Lyme for quite a few years now. I have to wonder if perhaps one or more of the herbs you are using is contributing to the issues you are having. Have you tried withdrawing from that protocal for a time and then if needed adding the herbs back in one at a time to see if one or more of them might be causing a problem?

Your diet is very, very limited. Can you possibly add in some fruits and veggies one at a time? You are not getting much nutrition form just eating a couple carbs and seeds.

You also mention having checked your supplements for gluten free statis. Are any of them supplements with wheat or barley grass? That is considered to technically be gluten free but many of us cannot tolerate them.

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You say you have been following an herbal protocal for treating Lyme for quite a few years now. I have to wonder if perhaps one or more of the herbs you are using is contributing to the issues you are having. Have you tried withdrawing from that protocal for a time and then if needed adding the herbs back in one at a time to see if one or more of them might be causing a problem?

Your diet is very, very limited. Can you possibly add in some fruits and veggies one at a time? You are not getting much nutrition form just eating a couple carbs and seeds.

You also mention having checked your supplements for gluten free statis. Are any of them supplements with wheat or barley grass? That is considered to technically be gluten free but many of us cannot tolerate them.

I'm aware I need fruits and veggies but I react to all horribly. Anything with any amount of fructose is by far the worst. The pain is so awful I spend the rest of the day debating about whether or not to go to the emergency room.

I'm also highly suspicious of the herbs. Over the last week I quit taking them just to see if I missed something there and so far it hasn't made a difference, but maybe my body just needs to go without them longer.

Where do most super sensitive celiacs find their herbs? Is there a particular brand that's super safe?

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So I've only been able to eat white potatoes, white rice and seeds for the last few months without violent pain. I'm about to try chicken stock, my first bit of meat in over a decade. My doc was originally suspecting Small Intestine Bacteria Overgrowth as the cause to this severe malabsorption, and because the tests for it aren't too reliable he decided to do a trial of antibiotics. If they made any bit of difference it would be evidence of SIBO, if not on to the next suspect.

I have Lyme Disease and I've been (successfully!) following an herbal protocol for the Lyme the last few years, but the goal with herbal protocols for Lyme are more about boosting the immune system and letting it suppress the bacteria, so I knew this experiment with antibiotics would stir / anger the Lyme since that bacteria is still (and probably always will be because of how long ago I contracted it) in my body. Boy was I right. If I had any doubt that I have Lyme disease that doubt was completely eradicated when I started the antibiotics. I had an especially horrible herxheimer reaction (worsening of symptoms as massive die-off of bacteria overloads the body with toxins) that scared the living shit out of my boyfriend. As expected, most my old lyme symptoms came roaring back (limb numbness, migraines, shoulder pain, muscle pain, tinnitus, abdominal cramps/pain, muscle spasms, brain fog, anxiety, depression, fatigue, nausea, back pain, black outs, tremors, etc etc) to a degree so unbearable I got suicidal. The pain just broke me in half. I somehow withstood the 2 weeks and came out on the other end with no change to malabsorption issues. I can still only eat potatoes, rice and seeds. (and am now in a world of lyme hurt)

So, doc has ruled out SIBO. He's moving on to tests for refractory celiac. I'd never even heard of this and what I've read isn't good. Can anyone tell me more about it? Is the testing accurate? From what I've read prognosis usually isn't good so I'm obviously worried.

(And before you can suggest it, no, I don't think there's any way I could still be ingesting gluten without knowing. I'm only eating potatoes, lundberg white rice and david brand seeds. All my supplements I've called/triple checked on gluten content and even had 2 nutritionists look through them. All my beauty products were long ago replaced.)

I was very slow to heal and had a second scope 6 months after my Celiac DX. The Gi's opinion when seeing the state of my intestine was refractory sprue. A very scary thing to hear! The biopsy report tells the condition of the cells they find. If it's refractory sprue your lymphocites will be high. Mine were not. I ended up going to Mayo and they did more tests. A hydrogen breath test showed a high hydrogen reading and a high methane, which they said was unusual. They said it was a probable SIBO infection. I also tried a couple of anibiotics with no change in symptoms.

We sound similar because I was reacting to more and more things too. I was put on digestive enzymes so I could break down the foods I ate better. They also put me on a steroid that stays in the intestine and is usually used for Crohn's. ( Budenoside) to knock down inflamation.

In my case it seems like I still react to more and more foods. I don't tolerate spices at all..and have to limit herbs..so I wonder if those that you take for the Lyme are causing you trouble?

I just had another scope and a colonoscopy this past week. I had started seeing blood on some stool which was very alarming. I had increased nausea and burning in my stomach too. The scopes showed I had quite a few small ulcers in my stomach..gastritis, and early signs of diverticulosis, and hemerhoids in the colon which bled when touched.

I have to send pics and the reports to Mayo to see what the next step will be.

In the mean time I did a lot of reading about GMO foods recently when there was a labeling proposition on the ballot in California. I'm really thinking it's worth taking a look at. I was using beet sugar and ate things with corn syrup. I've just cut out anything that could have GMOs. They suggest that the genetic changes in these foods don't break down and *could* cause the bacteria in our guts to take on an the ability to produce BT toxin. I haven't been tested for that, but I think I should bring it up with the GI?

If you aren't taking a digestive enzyme, I think you might benefit from it? Maybe you could try adding a few things, like organic bananas? I hate the added expense, but I'm trying organic veggies for a while to see if I notice improvement. My diet is quite limited too, so I know how you are struggling. best wishes for some answers.

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I was very slow to heal and had a second scope 6 months after my Celiac DX. The Gi's opinion when seeing the state of my intestine was refractory sprue. A very scary thing to hear! The biopsy report tells the condition of the cells they find. If it's refractory sprue your lymphocites will be high. Mine were not. I ended up going to Mayo and they did more tests. A hydrogen breath test showed a high hydrogen reading and a high methane, which they said was unusual. They said it was a probable SIBO infection. I also tried a couple of anibiotics with no change in symptoms.

We sound similar because I was reacting to more and more things too. I was put on digestive enzymes so I could break down the foods I ate better. They also put me on a steroid that stays in the intestine and is usually used for Crohn's. ( Budenoside) to knock down inflamation.

In my case it seems like I still react to more and more foods. I don't tolerate spices at all..and have to limit herbs..so I wonder if those that you take for the Lyme are causing you trouble?

I just had another scope and a colonoscopy this past week. I had started seeing blood on some stool which was very alarming. I had increased nausea and burning in my stomach too. The scopes showed I had quite a few small ulcers in my stomach..gastritis, and early signs of diverticulosis, and hemerhoids in the colon which bled when touched.

I have to send pics and the reports to Mayo to see what the next step will be.

In the mean time I did a lot of reading about GMO foods recently when there was a labeling proposition on the ballot in California. I'm really thinking it's worth taking a look at. I was using beet sugar and ate things with corn syrup. I've just cut out anything that could have GMOs. They suggest that the genetic changes in these foods don't break down and *could* cause the bacteria in our guts to take on an the ability to produce BT toxin. I haven't been tested for that, but I think I should bring it up with the GI?

If you aren't taking a digestive enzyme, I think you might benefit from it? Maybe you could try adding a few things, like organic bananas? I hate the added expense, but I'm trying organic veggies for a while to see if I notice improvement. My diet is quite limited too, so I know how you are struggling. best wishes for some answers.

My god, I'm so sorry to hear you're having to go through that. :( I'm pretty convinced now it could be all the herbs putting my immune system into overdrive / making the celiac so severe plus trace amounts of gluten I've been possibly ingesting in those herbs. I'm going to see a new Lyme doctor tomorrow to see what she thinks. I have a feeling I'll have to stop the herbs and start antibiotics, which is devestating news. But at this point I feel like I'm slowly dying of malabsorption/malnutrition and don't have much of a choice.

Thanks so much for sharing and I really really really hope you find some relief soon. <3

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My god, I'm so sorry to hear you're having to go through that. :( I'm pretty convinced now it could be all the herbs putting my immune system into overdrive / making the celiac so severe plus trace amounts of gluten I've been possibly ingesting in those herbs. I'm going to see a new Lyme doctor tomorrow to see what she thinks. I have a feeling I'll have to stop the herbs and start antibiotics, which is devestating news. But at this point I feel like I'm slowly dying of malabsorption/malnutrition and don't have much of a choice.

Thanks so much for sharing and I really really really hope you find some relief soon. <3

The herbs seem like possible culprits in your case? I find it interesting that you are trying to boost your immune response, while they are trying to dull mine down. The stronger your immune system the harder it can react to any trace gluten.

I hate the idea of antibiotics too, but if you need them be sure to take probiotics at the same time. I was told by the Mayo Dr. that one with acidopholis is really important.

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The herbs seem like possible culprits in your case? I find it interesting that you are trying to boost your immune response, while they are trying to dull mine down. The stronger your immune system the harder it can react to any trace gluten.

I hate the idea of antibiotics too, but if you need them be sure to take probiotics at the same time. I was told by the Mayo Dr. that one with acidopholis is really important.

Exactly. It's like the treatment for one of my conditions contradicts the other. Oy.

So where do people who react to trace amounts of gluten get their probiotics? It seems like anything that is processed I can't handle, so I'm scared to trust any brands. For the last week or so I've just been drinking kombucha.

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Well i've heard that staying on one thing for too long isn't very good (such as the same medication, same herbel treatment, etc) because your body gets used to it.

-shrug- :unsure:

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There is also the problem with salicylates. Could be why fruit n veggies are a worry. Except for pears, lettuce and potatoes, others are high in varying degrees of natural aspirin ( salicylate ). Can be a problem with autoimmune illness.

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So sorry to hear you are having to live with so much pain!!! I read your post and instantly thought of a book I read this summer. Just wanted to pass it along in case you might be interested. It is called The Road to Health by Laura L. Schroeder. It tells a story about a lady who contracted Lyme disease and was in so much pain, but after doing the Specific Carbohydrate Diet, she fought the disease and has healed from the debilitating pain. The book presents a 'modified specific carbohydrate diet' and recipes to follow. http://www.roadtohealthbook.blogspot.com/

What I've learned from reading about the Specific Carbohydrate Diet, potatoes and rice turns into sugar in our body, thus, contributing to the bacteria growth, which causes all kinds of problems (including pain and malabsorption). But if anything, the specific carbohydrate diet could be worth looking into.

I hope you find answers soon!!!

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For a probiotic, I make my own yogurt from Stonybrook farms organic plain whole milk yogurt and the no vitamin added whole milk from grain free cows which I get from a local farmer. Then I reuse it for a few cycles. The dilution factor seems to work. I tried with natural salt fermentation for awhile but it didn't work very well. I should try again.

I don't have a good herb source. Whatever I use I grow.

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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