Cristi,
Oh yes, that is a fun test! My husband just did it last week, double checking his status before we leave for three years. Hugs, Celia
Doctor's reaction to Dr. Fine's tests
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Luce,
The stool test is from Doctor's Data and i just have to take samples from three day's worth of stools. It will test for bacteria, parasites,and yeast.
It's called a comprehensive parasitology x3. It's located in St. Charles, IL. I will get the results in a few weeks.
As far as the other health issues.....I just had a thyroid test...iodine uptake test as my blood results show I'm slightly hyperthyroid. The one that concerns me the most is that my fasting blood insulin levels are too low. Mine came back as 3.5 and the normal range is 6-27. This is what has my doctors concerned....they suspect I have a tumor on my pancreas. I see the endocrinologist on the 19 to talk about this.
Thanks for all your great advise. I hope your Mother is doing better.
Love,
Cristi
The stool test is from Doctor's Data and i just have to take samples from three day's worth of stools. It will test for bacteria, parasites,and yeast.
It's called a comprehensive parasitology x3. It's located in St. Charles, IL. I will get the results in a few weeks.
As far as the other health issues.....I just had a thyroid test...iodine uptake test as my blood results show I'm slightly hyperthyroid. The one that concerns me the most is that my fasting blood insulin levels are too low. Mine came back as 3.5 and the normal range is 6-27. This is what has my doctors concerned....they suspect I have a tumor on my pancreas. I see the endocrinologist on the 19 to talk about this.
Thanks for all your great advise. I hope your Mother is doing better.
Love,
Cristi
Hi Luce,
The stool test is from Doctor's Data and i just have to take samples from three day's worth of stools. It will test for bacteria, parasites,and yeast.
It's called a comprehensive parasitology x3. It's located in St. Charles, IL. I will get the results in a few weeks.
As far as the other health issues.....I just had a thyroid test...iodine uptake test as my blood results show I'm slightly hyperthyroid. The one that concerns me the most is that my fasting blood insulin levels are too low. Mine came back as 3.5 and the normal range is 6-27. This is what has my doctors concerned....they suspect I have a tumor on my pancreas. I see the endocrinologist on the 19 to talk about this.
Thanks for all your great advise. I hope your Mother is doing better.
Love,
Cristi
The stool test is from Doctor's Data and i just have to take samples from three day's worth of stools. It will test for bacteria, parasites,and yeast.
It's called a comprehensive parasitology x3. It's located in St. Charles, IL. I will get the results in a few weeks.
As far as the other health issues.....I just had a thyroid test...iodine uptake test as my blood results show I'm slightly hyperthyroid. The one that concerns me the most is that my fasting blood insulin levels are too low. Mine came back as 3.5 and the normal range is 6-27. This is what has my doctors concerned....they suspect I have a tumor on my pancreas. I see the endocrinologist on the 19 to talk about this.
Thanks for all your great advise. I hope your Mother is doing better.
Love,
Cristi
Cristi,
I'm sorry, I've been reading this post, but haven't gotten through the whole thing. As of the fourth page, no one had mentioned that you may be getting hidden sources of your intolerances. Please excuse me if this has been mentioned.
Check your medications, tooth paste, licking envelopes, lipstick, soap getting into your mouth either while you're showering, on dishes, etc. (funny story on my part), crumbs from other family members, touching bird seed. I've been contaminated often!
As to you seeming to get worse, that's actually a good sign, it means that you have eliminated your intolerances enough that you're starting to react to small amounts. It really is a good sign, but doesn't feel like it!
Hope this helps, Jean
I'm sorry, I've been reading this post, but haven't gotten through the whole thing. As of the fourth page, no one had mentioned that you may be getting hidden sources of your intolerances. Please excuse me if this has been mentioned.
Check your medications, tooth paste, licking envelopes, lipstick, soap getting into your mouth either while you're showering, on dishes, etc. (funny story on my part), crumbs from other family members, touching bird seed. I've been contaminated often!
As to you seeming to get worse, that's actually a good sign, it means that you have eliminated your intolerances enough that you're starting to react to small amounts. It really is a good sign, but doesn't feel like it!
Hope this helps, Jean
Be kind to everyone, because you never know what battles they are fighting.
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Back at ya Cristi!cludwig wrote:
SO my first question is for Joanna....I understand you took entocort while going on a gluten free diet......were you on the paleo diet at that time or did you do that later? If you cut out grains and nightshade veggies later...was it bacause they were giving you diarrhea or was it bacause you just felt better getting rid of rice and potatoes? If you ever had problems again would you consider going back on the entocort?
I started a Gluten Free diet at the time I started the Entocort. My plan was to take the med for about 6 months and get adjusted to being GF with hope that after weaning off it slowly my diet would then take over and control my symptoms. I had been SO sick with chronic D, muscle and joint pain, fatigue and all that and just wanted immediate relief which is why I chose a combo med/diet route instead of trying diet alone. I'm not as brave as many folks here.
Studies show there is a 8 week marker after an MC'r stops using Entocort at which time symptoms may begin to return. At about this time I noticed a change in my bowels and gas so I started weaning off dairy which improved things greatly. As time has passed I realize also that I feel best staying away from processed foods, (I rarely buy GF/DF products)
refined sugars, soy, nuts/legumes, and grains. I do okay with eggs. If I eat any of these triggers I will have a D reaction. I guess my body has fined tuned itself to recognise these as problems even in minute or trace amounts.
The lifestyle my family has supports a Paleo type diet for me as we hunt, fish and garden to fill our freezers. Kind of natural and organic so I guess I eat close to a SCD/Paleo diet If I had to put a name on it. It's a simple and easy plan to follow for me.
Yes, I would take Entocort again in a heartbeat if the need ever arose again. It was a great med for me. I understand you may have had some negative reactions to using it?
Keep asking questions and keep faith! Your inspiring some very good conversations from which I'm learning alot.
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
-
harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
This may interest some of you, if you have not already seen it. it's a 2006 recent test/study for Gliadin, Zonulin and gut permeability in both Celiac & Non-Celiac folks.Lucy wrote:At any rate, it is likely that all these related diseases involve increased porousness of the gut, and that means that zonulin must be increased in anyone with any of these conditions. Does anyone know if Dr. Fasano or anyone has actually tested people with these other conditions for the amount of zonulin they actually have, even if it's just a preliminary finding on small numbers of people? Polly, is this your understanding of what Dr. Fasano is expecting to find -- increased zonulin in all these entities?
http://tinyurl.com/m7h5b
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
Cristi,
FWIW, when Karen was in the early stages of her search for relief, after she had started the GF diet, but before she had time to heal, her doctor suspected that she had a serious problem with her pancreas, also. He wanted her to take a very intrusive test that carried a risk of causing permanent serious damage to her pancreas, as I recall. She declined the test, and the problem went away, as she healed.
Your situation may be different, of course, but the point is that gluten damage can extend to many parts of the body, and those issues will slowly improve, as healing progresses.
Love,
Wayne
P S Joanna, that's an excellent article. Obviously, Dr. Fasano is still making progress, and it appears that his trial "remedy" is showing much promise. Thanks for posting that.
FWIW, when Karen was in the early stages of her search for relief, after she had started the GF diet, but before she had time to heal, her doctor suspected that she had a serious problem with her pancreas, also. He wanted her to take a very intrusive test that carried a risk of causing permanent serious damage to her pancreas, as I recall. She declined the test, and the problem went away, as she healed.
Your situation may be different, of course, but the point is that gluten damage can extend to many parts of the body, and those issues will slowly improve, as healing progresses.
Love,
Wayne
P S Joanna, that's an excellent article. Obviously, Dr. Fasano is still making progress, and it appears that his trial "remedy" is showing much promise. Thanks for posting that.
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Joanna,
Thanks for the article. I wish that I could review the whole article as the abstract doesn't mention what conditions these other patients have/had. I'm pretty sure that they wouldn't have had Type I diabetics, for instance, since it's been show that Type I diabetics have increased zonulin as well, right? I'd forgotten that when I posed that earlier question, so it IS known that at least one of these other diseases has the increased zonulin.
By the way, glad I thought of the Type I diabetes as it's relevant to your comment about Karen's prior condition. Yes, gliadin reactions DO damage just about every organ in the body, particularly the ones that have an epithelial type lining. In the case of the pancreas, I've read that their can be not only endocrine effects but exocrine as well.
This explains why there are sooo many symptoms that don't, on the surface, appear to be related to each other, but they are.
The problem gets worse when the circulating immune complexes become able to get from the lumen of the gut through the damaged lining, into the blood which circulates them all over the body. It doesn't help that increased zonulin or almost indistinguishable from zonulin, makes it possible for these to also cross the blood-brain barrier, effecting the brain. On top of all this, malabsorption of nutrients, contributes to neurological damage, etc.
Many tumors are considered autoimmune, and I happen to have become a tumor-former during this whole disease process.
We do well to not think of this as a single system disease entity, but rather a whole body experience! Ha! One I'd rather have avoided, by the way.
Anyway, I have a feeling that the "other patients" compared to these biopsy-proven celiacs weren't those suspected of having increased zonulin from other causes, but I'd sure like to know for sure. There's got to be a breakdown in terms of what there diagnoses were who didn't have the classical villi damage observable by a pathologist, but that would require reading the full article.
Any way we can get that without a big charge? Perhaps we could e-mail Dr. Fasano?
Interesting.
Luce
Thanks for the article. I wish that I could review the whole article as the abstract doesn't mention what conditions these other patients have/had. I'm pretty sure that they wouldn't have had Type I diabetics, for instance, since it's been show that Type I diabetics have increased zonulin as well, right? I'd forgotten that when I posed that earlier question, so it IS known that at least one of these other diseases has the increased zonulin.
By the way, glad I thought of the Type I diabetes as it's relevant to your comment about Karen's prior condition. Yes, gliadin reactions DO damage just about every organ in the body, particularly the ones that have an epithelial type lining. In the case of the pancreas, I've read that their can be not only endocrine effects but exocrine as well.
This explains why there are sooo many symptoms that don't, on the surface, appear to be related to each other, but they are.
The problem gets worse when the circulating immune complexes become able to get from the lumen of the gut through the damaged lining, into the blood which circulates them all over the body. It doesn't help that increased zonulin or almost indistinguishable from zonulin, makes it possible for these to also cross the blood-brain barrier, effecting the brain. On top of all this, malabsorption of nutrients, contributes to neurological damage, etc.
Many tumors are considered autoimmune, and I happen to have become a tumor-former during this whole disease process.
We do well to not think of this as a single system disease entity, but rather a whole body experience! Ha! One I'd rather have avoided, by the way.
Anyway, I have a feeling that the "other patients" compared to these biopsy-proven celiacs weren't those suspected of having increased zonulin from other causes, but I'd sure like to know for sure. There's got to be a breakdown in terms of what there diagnoses were who didn't have the classical villi damage observable by a pathologist, but that would require reading the full article.
Any way we can get that without a big charge? Perhaps we could e-mail Dr. Fasano?
Interesting.
Luce
Cristi,
Are your serum pancreatic enzymes elevated, also? That's another reason to suspect gluten as the culprit affecting your pancreas' performance:
http://tinyurl.com/hj63h
Love,
Tex
Are your serum pancreatic enzymes elevated, also? That's another reason to suspect gluten as the culprit affecting your pancreas' performance:
http://tinyurl.com/hj63h
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,
I'm looking at my lab results and the Amylase, Tot is 61 U/L and the normal range is 28-100. So it doesn't look like that is elevated but I couldn't find that the other enzyme was measured.
The confusing thing for me is that my glucose levels are fine, but the insulin levels are low....and my symptoms are that of hypogycemia...need to eat every3 hours or I'm extremely weak and hungry. When I research this I find that to get hypoglycemia my insulin levels would be high. So I don't know what to make of any of it. I did read that in addition to pancreatic tumors causing low insulin levels that hormone imbalances can cause this....no ovaries and the DHEA from the adrenal glands are messed up...so there's definitely hormone imbalance.
It's hard to get these doctors to consider what role gluten is playing in all this...when I tell them I have lymphocytic colitis ...the response is "is that what they're calling it these days? That just means your colon is inflamed." Then I tell them gluten is doing it....they just ignore me. Maybe if I had a diagnosed celiac disease they would take it seriously...but who knows.
Well, I'm sure I'm not telling you anything you haven't experienced yourself. Thanks, Tex for all your help.
Another question...do you want me to to keep posting on this post as it's 10 pages long...or is it easier for everyone to start new ones? Not sure how things are usually done. Thanks again.
Love,
Cristi
I'm looking at my lab results and the Amylase, Tot is 61 U/L and the normal range is 28-100. So it doesn't look like that is elevated but I couldn't find that the other enzyme was measured.
The confusing thing for me is that my glucose levels are fine, but the insulin levels are low....and my symptoms are that of hypogycemia...need to eat every3 hours or I'm extremely weak and hungry. When I research this I find that to get hypoglycemia my insulin levels would be high. So I don't know what to make of any of it. I did read that in addition to pancreatic tumors causing low insulin levels that hormone imbalances can cause this....no ovaries and the DHEA from the adrenal glands are messed up...so there's definitely hormone imbalance.
It's hard to get these doctors to consider what role gluten is playing in all this...when I tell them I have lymphocytic colitis ...the response is "is that what they're calling it these days? That just means your colon is inflamed." Then I tell them gluten is doing it....they just ignore me. Maybe if I had a diagnosed celiac disease they would take it seriously...but who knows.
Well, I'm sure I'm not telling you anything you haven't experienced yourself. Thanks, Tex for all your help.
Another question...do you want me to to keep posting on this post as it's 10 pages long...or is it easier for everyone to start new ones? Not sure how things are usually done. Thanks again.
Love,
Cristi
Moving on to the liver as an fyi:
It is not uncommon to see elevated liver enzymes in persons with celiac disease or gs.
Perhaps some of you haven't seen references in the literature to the individuals who were actually on the transplant list before the diet, and now are doing without even dialysis. Isn't this amazing!
A word of caution though, sometimes the stuff they put in our anesthesias, even for something as simple as a colonoscopy can cause a few liver enzymes to be elevated for a few months, but they go gradually down until they are normal again if that's all that's causing them. The one that did that to mine was that one they give to make sure you don't remember anything during the procedure.
Cristi, I hope that Tex's article will help to ease any fears you might be having. Hopefully, the enzymes will have already gone down significantly when they are rechecked if not gone down all the way to normal. If it turns out that the next set of enzymes is obviously lower than the elevated set were, you could ask your doc to check them again after a period of time to see if they continue to drop.
Trust but verify, as they say.
Yours, Luce
It is not uncommon to see elevated liver enzymes in persons with celiac disease or gs.
Perhaps some of you haven't seen references in the literature to the individuals who were actually on the transplant list before the diet, and now are doing without even dialysis. Isn't this amazing!
A word of caution though, sometimes the stuff they put in our anesthesias, even for something as simple as a colonoscopy can cause a few liver enzymes to be elevated for a few months, but they go gradually down until they are normal again if that's all that's causing them. The one that did that to mine was that one they give to make sure you don't remember anything during the procedure.
Cristi, I hope that Tex's article will help to ease any fears you might be having. Hopefully, the enzymes will have already gone down significantly when they are rechecked if not gone down all the way to normal. If it turns out that the next set of enzymes is obviously lower than the elevated set were, you could ask your doc to check them again after a period of time to see if they continue to drop.
Trust but verify, as they say.
Yours, Luce
Hi Cristi,
Unfotunately, doctors with that attitude are fairly common, and obviously not much help.
Most members seem to prefer relatively short threads, but everyone has their own style, and we can certainly live with whatever works best for you.
I can think more clearly in the morning, so let me think about the low insulin/normal glucose levels situation, and research that a bit. Maybe I'll be lucky enough to find or figure out some kind of connection.
Love,
Tex
Unfotunately, doctors with that attitude are fairly common, and obviously not much help.
Most members seem to prefer relatively short threads, but everyone has their own style, and we can certainly live with whatever works best for you.
I can think more clearly in the morning, so let me think about the low insulin/normal glucose levels situation, and research that a bit. Maybe I'll be lucky enough to find or figure out some kind of connection.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
The endochrinologist who lectured in Dallas, Dr. Delcher was talking about things like this.
I'm not sure whether or not the outlines that used to be on Dr. Fine's site would be helpful on this point as outlines have to be a bit skimpy sometimes, but if you can find those pages there, and they WORK, then perhaps that would be a good explanation for everyone.
His lecture topic had to do with how gs effects the glands/hormones, btw.
As I recall, he came to realize that the stool testing was helpful very gradually, maybe starting with an employee or someone who'd found them helpful. Think he first told them, "Well, it couldn't hurt." Then, when he saw the improvement in a few folks, he'd tell them that it would probably be a good idea, and finally, he'd seen sooo much improvement in people, that he began telling ppeople things like, your kid is sick, and you've GOT to do this!" I think if enough people get diagnosed, and find this and Dr. Fine's site, and inform their docs how much better their symptoms arer, that they can't help but notice. On the other hand, if there are too many people like me who get the M.C. diagnosis and never go back and tell them they are still sick, then how will our docs have a way to observe the difference,
It was just a total fluke that I ended up trying this diet thoroughly enough to see the improvement I did so soon, even with the continue smaller amounts of diarrhea in the early period.
Even if this is only antedoctal information for them, they know as well as we, that the diet isn't toxic, and realize it MIGHT work, so they mention it to a patient or even a family member, and what do you know, it works.
And that, folks, is why we need to give feedback to our docs both while NOT on the diet and symptomatic, and when we get on the diet and become assymptomatic, at last in part.
We need to tell them what is actually helping, including the other allergens that bring improvement, take them research materials that help them to understand all information that is related to M.C. to get the BIG picture.
This doesn't have to cost us an office call as we can organize the materials, and mail them to him/her. It's the doc's choice whether or not to read what we send them.
Just my thoughts. Wish I had a printer on this thing so I could do more of this myself.
Yep, probably time for a new thread here.
Yours, Luce
The endochrinologist who lectured in Dallas, Dr. Delcher was talking about things like this.
I'm not sure whether or not the outlines that used to be on Dr. Fine's site would be helpful on this point as outlines have to be a bit skimpy sometimes, but if you can find those pages there, and they WORK, then perhaps that would be a good explanation for everyone.
His lecture topic had to do with how gs effects the glands/hormones, btw.
As I recall, he came to realize that the stool testing was helpful very gradually, maybe starting with an employee or someone who'd found them helpful. Think he first told them, "Well, it couldn't hurt." Then, when he saw the improvement in a few folks, he'd tell them that it would probably be a good idea, and finally, he'd seen sooo much improvement in people, that he began telling ppeople things like, your kid is sick, and you've GOT to do this!" I think if enough people get diagnosed, and find this and Dr. Fine's site, and inform their docs how much better their symptoms arer, that they can't help but notice. On the other hand, if there are too many people like me who get the M.C. diagnosis and never go back and tell them they are still sick, then how will our docs have a way to observe the difference,
It was just a total fluke that I ended up trying this diet thoroughly enough to see the improvement I did so soon, even with the continue smaller amounts of diarrhea in the early period.
Even if this is only antedoctal information for them, they know as well as we, that the diet isn't toxic, and realize it MIGHT work, so they mention it to a patient or even a family member, and what do you know, it works.
And that, folks, is why we need to give feedback to our docs both while NOT on the diet and symptomatic, and when we get on the diet and become assymptomatic, at last in part.
We need to tell them what is actually helping, including the other allergens that bring improvement, take them research materials that help them to understand all information that is related to M.C. to get the BIG picture.
This doesn't have to cost us an office call as we can organize the materials, and mail them to him/her. It's the doc's choice whether or not to read what we send them.
Just my thoughts. Wish I had a printer on this thing so I could do more of this myself.
Yep, probably time for a new thread here.
Yours, Luce