Hey guys,
I haven't posted in a while because I've been having a hard time lately, but I wanted to update everyone on my last doctor's visit. A few months ago, my doctor told me he suspected microscopic colitis and put me on apriso to see if it would help. The apriso didn't help, it just gave me really bad headaches. So yesterday, when I went in I was expecting him to schedule a colonoscopy like he had planned before but instead he told me I was either sick because I was still eating gluten (I have Celiac) or because I have IBS and need to try changing my diet or going on Xifaxan for SIBO.
At that point, I broke down because I've already changed my diet a billion times and tried xifaxan and a hundred other different medications, but nothing worked, and it was obvious that he didn't remember who I am since he's already tried all of this with me. I explained to him that I was diagnosed with Celiac 3 years ago and I've only gotten worse since giving up gluten, so he looked at my Celiac blood test and biopsy results and found that they were only "borderline" positive so I probably don't even have Celiac. With Celiac, the villi are supposed to be blunted, but my biopsies showed that they were fine, I did have inflammation in my biopsies though, so that's why they diagnosed me.
Anyway, I'm now back to eating gluten for the next two weeks so that I can have my Celiac tests redone, and I'll also be having a colonoscopy and endoscopy redone to see what the problem is. I just can't believe I've gone three years seeing different doctors and no one has ever bothered to look through my file, they were just so quick to tell me it was my fault for eating hidden gluten. Does anyone know if microscopic colitis can effect the small intestine?
Doctors...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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amberlink09
- Adélie Penguin
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- Joined: Sun Jun 24, 2012 5:44 pm
- Location: United States
Hi Amber. I think Tex should chime in here, but I believe I have heard him say that MC can effect any part of the digestive tract. I'm so sorry you are suffering so. Your colonoscopy and endoscopy should give you some results, but whether you are "borderline" celiac or celiac shouldn't change the fact that you can't have gluten. Have you tried Entocort( budesonide) yet? Once you get you tests, you will know more and if you haven't tried that med, you should ask for it. It really does seem to help most of us tremendously.
Please let us know how you are doing down the road.
Leah
Please let us know how you are doing down the road.
Leah
You have come to the right place. I think most of us have horror stories about doctors.. that is why the site has a list of doctors people have posted who have helped.
I used entocort for years and it gave me my life back. I chose that route since I am old and certainly not of child bearing age:) I am currently enjoying a one full year of remission without taking any entocort. This has happened once before.. a full year of no medications. The doctors just call them spontaneous remissions because no one knows why they happen...LOL
Took me many doctors and about three years to get a diagnosis of collagenous colitis.. then had to wait for entocort to come back on the market. Meantime there were trips to the hospital for rehydrations where I was treated quite badly and blamed for not drinking enough water.. tried two hospitals that were close to us at the time for rehydration and got the same treatment.. then they tried to get me to admit I was either a drug addict or an alcoholic who needed substance abuse counseling... since no one else gets that sick on their own... unless they going through withdrawal cold turkey...
No fun having these weird illnesses without a one size fits all cure. Almost (but not really) was beginning to believe I was causing my own illness as so many doctors told me. IBS means... I don't know... think it was my gastro doc who told me that or maybe it was my family doc:)
grannyh
I used entocort for years and it gave me my life back. I chose that route since I am old and certainly not of child bearing age:) I am currently enjoying a one full year of remission without taking any entocort. This has happened once before.. a full year of no medications. The doctors just call them spontaneous remissions because no one knows why they happen...LOL
Took me many doctors and about three years to get a diagnosis of collagenous colitis.. then had to wait for entocort to come back on the market. Meantime there were trips to the hospital for rehydrations where I was treated quite badly and blamed for not drinking enough water.. tried two hospitals that were close to us at the time for rehydration and got the same treatment.. then they tried to get me to admit I was either a drug addict or an alcoholic who needed substance abuse counseling... since no one else gets that sick on their own... unless they going through withdrawal cold turkey...
No fun having these weird illnesses without a one size fits all cure. Almost (but not really) was beginning to believe I was causing my own illness as so many doctors told me. IBS means... I don't know... think it was my gastro doc who told me that or maybe it was my family doc:)
grannyh
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Deanna in CO
- Adélie Penguin
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- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Amber,
OK, I would personally RUN from this doctor and find one who at the very least recognizes the seriousness of a diagnosis of celiac disease! It doesn't matter how "borderline" the diagnosis is, the fact that you had ANY positive results means if you go back to eating gluten - at ALL - you are going to make the damage in your gut that much worse. It's very difficult to get positive results on the celiac blood tests; you have to already have severe damage to your intestines. Your doctor is showing you that he knows little or nothing about celiac disease.
I would expect a new GI doc who hears about your symptoms to recommend some basic blood work and then an immediate colonoscopy (with biopsies - standard procedure these days for chronic D) and maybe endoscopy. No more guesswork! You need to KNOW if you have MC, Crohn's, or ulcerative colitis (all of which, I believe, are more likely if you are celiac).
If you can possibly find a way to swing it financially, the Enterolab tests will tell you if you are sensitive to gluten, dairy, and soy (which may be provoking your current symptoms); their genetic tests can confirm that you do indeed have the genes for celiac disease. In fact, the genetic testing is probably more valuable in your case than even the antibody tests, because if you happen to have two copies of the genes for celiac, that's almost certainly your problem now (even one copy makes it a lot more likely).
Hang in there and don't let ignorant doctors discourage you. We are all supporting you.
Deanna
OK, I would personally RUN from this doctor and find one who at the very least recognizes the seriousness of a diagnosis of celiac disease! It doesn't matter how "borderline" the diagnosis is, the fact that you had ANY positive results means if you go back to eating gluten - at ALL - you are going to make the damage in your gut that much worse. It's very difficult to get positive results on the celiac blood tests; you have to already have severe damage to your intestines. Your doctor is showing you that he knows little or nothing about celiac disease.
I would expect a new GI doc who hears about your symptoms to recommend some basic blood work and then an immediate colonoscopy (with biopsies - standard procedure these days for chronic D) and maybe endoscopy. No more guesswork! You need to KNOW if you have MC, Crohn's, or ulcerative colitis (all of which, I believe, are more likely if you are celiac).
If you can possibly find a way to swing it financially, the Enterolab tests will tell you if you are sensitive to gluten, dairy, and soy (which may be provoking your current symptoms); their genetic tests can confirm that you do indeed have the genes for celiac disease. In fact, the genetic testing is probably more valuable in your case than even the antibody tests, because if you happen to have two copies of the genes for celiac, that's almost certainly your problem now (even one copy makes it a lot more likely).
Hang in there and don't let ignorant doctors discourage you. We are all supporting you.
Deanna
Once I was diagnosed.. I refused to have another colonoscopy.. which is what each doctor usually wants to do. The slides were available to any doctor to view.. the doc I ended up with and like.. actually went and viewed the slides (None of the others would bother). Then he did some kind of genetic testing (blood work) to rule out celiac, crohns.. etc...
The reason I refuse any more colonoscopies is that I am sure the prep (40 visicol pill routine) is what triggered my CC in the first place.
grannyh
The reason I refuse any more colonoscopies is that I am sure the prep (40 visicol pill routine) is what triggered my CC in the first place.
grannyh
Amber,
Wow our stories are certainly similar. I was diagnosed 2 or 3 years ago (via blood test) with Celiac and haven't felt better being gluten free. I was pregnant last year and finally went gluten free in my first tri-mester (which I should have done immediately upon Celiac diagnosis but my symptoms weren't bad so I didn't think too much of it). When I was initially diagnosed with Celiac I didn't fully comprehend how important it was to be strictly GF. I've been GF for 15 months now and I'm still struggling. I get so tired of being told you must be eating "hidden gluten". I have de-glutened my entire home- new pots, pans, and entire family eats GF. Fortunately, your villi appear fine which is a good thing. I went on Asacol for microscopic colitis and it didn't do anything for me, so I understand your pain. I've tried a billion diets too, and I'm about to start the Specific Carbohydrate Diet. My GI and Naturopath Aunt highly recommend it for healing the gut.
I'm getting an upper endoscopy and MRE of abdomen soon to see if I have Crohn's. I do think that MC can affect the small intestine, Celiac disease definitely can.
Good luck with your testing! Hoping you feel better fast.
Wow our stories are certainly similar. I was diagnosed 2 or 3 years ago (via blood test) with Celiac and haven't felt better being gluten free. I was pregnant last year and finally went gluten free in my first tri-mester (which I should have done immediately upon Celiac diagnosis but my symptoms weren't bad so I didn't think too much of it). When I was initially diagnosed with Celiac I didn't fully comprehend how important it was to be strictly GF. I've been GF for 15 months now and I'm still struggling. I get so tired of being told you must be eating "hidden gluten". I have de-glutened my entire home- new pots, pans, and entire family eats GF. Fortunately, your villi appear fine which is a good thing. I went on Asacol for microscopic colitis and it didn't do anything for me, so I understand your pain. I've tried a billion diets too, and I'm about to start the Specific Carbohydrate Diet. My GI and Naturopath Aunt highly recommend it for healing the gut.
I'm getting an upper endoscopy and MRE of abdomen soon to see if I have Crohn's. I do think that MC can affect the small intestine, Celiac disease definitely can.
Good luck with your testing! Hoping you feel better fast.
Hi Amber,
I had a serious reaction to Xifanan. I only took one pill and had very extreme pain and cramping. One pill was enough.
I feel bad you are getting such a runaround from the Drs. Perhaps consider have Tex look at your original Celiac blood work and biopsy lab work either on this forum or privately. He might catch something the docs missed. You might consider having him look at your new lab results either privately or on this forum.
Feel bad you are getting such a runaround. Brandy
I had a serious reaction to Xifanan. I only took one pill and had very extreme pain and cramping. One pill was enough.
I feel bad you are getting such a runaround from the Drs. Perhaps consider have Tex look at your original Celiac blood work and biopsy lab work either on this forum or privately. He might catch something the docs missed. You might consider having him look at your new lab results either privately or on this forum.
Feel bad you are getting such a runaround. Brandy
Hi Amber,
FWIW, I agree with Deanna and Marie -- your doctor is lost, and he doesn't appear to be interested in finding his way back to civilization.
If your small intestine biopsies showed "inflammation", that would be a Marsh 1 level of damage (lymphocytic infiltration). That can either be an early stage of celiac disease (before the villi are all destroyed), or it can indicate MC. Yes, as Marie mentioned, most of us with MC have an inflamed small intestine. And conversely, most celiacs show the same pattern of inflammation in their colon (but their doctors are unaware of it, and unaware of what it means).
You can humor your misguided doctor if you want, but I can guarantee you that after two weeks of eating gluten, even though you might be sick as a dog, your celiac blood test will be negative, because your villus damage will not have progressed (if you've been on a GF diet for years), and without at least a Marsh 2 level of damage, the blood test will always be negative. It takes months/years for gluten to destroy the villi -- no significant changes will occur in only two weeks, that's for sure. Your doctor must have been asleep when celiac disease was discussed during his medical school training.
I didn't realize that Cracker Jacks were still available, but they must be, because it sounds as though your doctor must have found his certificate of specialization in gastroenterology as a prize in a Cracker Jacks box.
The only way to receive an official diagnosis of MC is by means of a pathologist examining biopsy samples taken from the mucosa of the colon during either a sigmoidoscopy or a colonoscopy. Your doctor doesn't appear inclined to be willing to give you that opportunity. He's effectively denying your right to a diagnosis. (Is that malpractice, or what?)
Your misguided/deranged doctor seems more interested in "proving" that you don't have celiac disease, than in actually tracking down your problem (which is almost surely both celiac disease and MC). It seems rather odd for him to be trying to prove that you don't have a disease caused by gluten sensitivity, when there's no other explanation for your symptoms. And of course the inept way he's going about it, he certainly won't be able to confirm a celiac diagnosis, so he will have accomplished his goal by means of his unmitigated incompetence. Maybe he wants to diagnose you with some idiopathic disease.
I'm sorry you got stuck with such a klutz.
Tex
FWIW, I agree with Deanna and Marie -- your doctor is lost, and he doesn't appear to be interested in finding his way back to civilization.
If your small intestine biopsies showed "inflammation", that would be a Marsh 1 level of damage (lymphocytic infiltration). That can either be an early stage of celiac disease (before the villi are all destroyed), or it can indicate MC. Yes, as Marie mentioned, most of us with MC have an inflamed small intestine. And conversely, most celiacs show the same pattern of inflammation in their colon (but their doctors are unaware of it, and unaware of what it means).
You can humor your misguided doctor if you want, but I can guarantee you that after two weeks of eating gluten, even though you might be sick as a dog, your celiac blood test will be negative, because your villus damage will not have progressed (if you've been on a GF diet for years), and without at least a Marsh 2 level of damage, the blood test will always be negative. It takes months/years for gluten to destroy the villi -- no significant changes will occur in only two weeks, that's for sure. Your doctor must have been asleep when celiac disease was discussed during his medical school training.
I didn't realize that Cracker Jacks were still available, but they must be, because it sounds as though your doctor must have found his certificate of specialization in gastroenterology as a prize in a Cracker Jacks box.
The only way to receive an official diagnosis of MC is by means of a pathologist examining biopsy samples taken from the mucosa of the colon during either a sigmoidoscopy or a colonoscopy. Your doctor doesn't appear inclined to be willing to give you that opportunity. He's effectively denying your right to a diagnosis. (Is that malpractice, or what?)
Your misguided/deranged doctor seems more interested in "proving" that you don't have celiac disease, than in actually tracking down your problem (which is almost surely both celiac disease and MC). It seems rather odd for him to be trying to prove that you don't have a disease caused by gluten sensitivity, when there's no other explanation for your symptoms. And of course the inept way he's going about it, he certainly won't be able to confirm a celiac diagnosis, so he will have accomplished his goal by means of his unmitigated incompetence. Maybe he wants to diagnose you with some idiopathic disease.
I'm sorry you got stuck with such a klutz.
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,
So sorry you are not feeling well, Doctors just do no get it!! I have had similar experience. I just wanted to let you know that I had problems with gluten free foods because I can not tolerate the additive xanthium Gum, or Guar gum they are used to replace the gluten in GF breads, crackers, also in a number of other foods. The reaction is severe D. I also cannot tolerate any artificial sweeteners
What Im try to get across you may be reacting to more than one thing. Something you eat that you think is safe has another ingredient that you will re-act to.
Good luck, feel better.
Hugs,
k
So sorry you are not feeling well, Doctors just do no get it!! I have had similar experience. I just wanted to let you know that I had problems with gluten free foods because I can not tolerate the additive xanthium Gum, or Guar gum they are used to replace the gluten in GF breads, crackers, also in a number of other foods. The reaction is severe D. I also cannot tolerate any artificial sweeteners
What Im try to get across you may be reacting to more than one thing. Something you eat that you think is safe has another ingredient that you will re-act to.
Good luck, feel better.
Hugs,
k
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I have come to the conclusion that when it comes to my gastro-intestinal tract I am my own best doctor. In fact I no longer even seek a doctor's advice about gastro-intestinal issues. The best advice I have gotten has come from this forum, particularly the advice concerning diet. The diagnostic standards for a disease are generally arbitrary. The fact that you do not reach the arbitrarily determined criteria for a given disease does not mean that you are not sick. This seems especially true when it comes to celiac disease. You can be reacting to gluten without testing positive on any celiac test the doctor might perform . Luckily you do not need a doctor's prescription or even a doctor's blessing to go gluten free. You do not even need a diagnosis. You can have control over your diet whatever the professionals might advise. We are generally raised to believe that when you are sick you go see a doctor who examines you and orders tests and from these the doctor figures out what is wrong is prescribes an appropriate treatment. Then you get well. But this models presumes that doctors know all there is to know about the body, but of course this cannot be true. There is always a lot to learn. The trouble comes, not because medical ignorance exists, but because doctors presume that they know things when they do not. I would not follow this doctor's advice. It seems to me that it will do more harm than good.
Jean
Jean
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amberlink09
- Adélie Penguin
- Posts: 130
- Joined: Sun Jun 24, 2012 5:44 pm
- Location: United States
Thanks for all the help guys! I've had 4 GI's so far and two have told me that I probably don't have Celiac. I still think I do, so this is more of a personal experiment for me to see how I feel, especially since everyone keeps telling me that two weeks isn't long enough to make up the damage. I actually don't plan to go back to eating gluten after these two weeks. I've been sick for about nine years- so since I was 12, but I'm told that the gluten does less damage when you are younger. The doctor who originally diagnosed me with Celiac retired unfortunately, but worked in the same practice as my current doctor. Here are my Celiac panel results if you'd like to help me with them Tex:
Gliadin IgG- 13.4 (Normal <10)
Gliadin IgA- 0.9 (Normal <5)
TTG IgG- 0.4 (Normal <6)
TTG IgA- 0.5 (Normal <4)
I would switch doctors, but I've been with this one for two years and I just scheduled the endoscopy and colonoscopy with biopsies with him, and I don't want to wait any longer. In terms of what I've tried I've done every sort of diet including paleo, SCD, and an elimination diet. Paleo and SCD had great effects on me for about 3 months but then they both began to fail after that. As far as medication goes I have tried low dose anti-depressants for IBS, muscle relaxers that release in the intestines, Xifaxan, and Apriso. No one will give me anything like enterocort, so I'm hoping that even if more inflammation is found I can at least give that a try. I have been completely and totally gluten free, I moved into a one bedroom apartment instead of keeping a roommate because I didn't want to deal with cross contamination anymore. I have all new pots and pans and I always read labels.
I wish I had money for the enterolab testing, if nothing is found here I'm going to be trying to scrape together the money for those tests, at least they will finally tell me something.
Gliadin IgG- 13.4 (Normal <10)
Gliadin IgA- 0.9 (Normal <5)
TTG IgG- 0.4 (Normal <6)
TTG IgA- 0.5 (Normal <4)
I would switch doctors, but I've been with this one for two years and I just scheduled the endoscopy and colonoscopy with biopsies with him, and I don't want to wait any longer. In terms of what I've tried I've done every sort of diet including paleo, SCD, and an elimination diet. Paleo and SCD had great effects on me for about 3 months but then they both began to fail after that. As far as medication goes I have tried low dose anti-depressants for IBS, muscle relaxers that release in the intestines, Xifaxan, and Apriso. No one will give me anything like enterocort, so I'm hoping that even if more inflammation is found I can at least give that a try. I have been completely and totally gluten free, I moved into a one bedroom apartment instead of keeping a roommate because I didn't want to deal with cross contamination anymore. I have all new pots and pans and I always read labels.
I wish I had money for the enterolab testing, if nothing is found here I'm going to be trying to scrape together the money for those tests, at least they will finally tell me something.
Hi Amber,
Of course, the blood tests have such low sensitivity that they are notorious for missing antibodies due to food sensitivities, but even though most of your results suggest that you were not having an autoimmune reaction at the time of the test, the IgG result clearly shows that you were experiencing a chronic (long-term) reaction to gluten.
The impression I get is that the results indicate either non-celiac gluten sensitivity, or the early stages of celiac disease. By adopting the GF diet, you have presumably stopped the progression of celiac disease, so if you were to do a gluten challenge in the hopes of yielding a positive celiac test result, it would almost surely take anywhere from several months to several years of eating gluten before those results would all be positive for a celiac diagnosis. The celiac diagnostic procedure is pitifully inadequate, but virtually all doctors fail to recognize that issue (at least they continue to pretend that it's not a problem).
The fact that each time you adopted either the paleo diet or the SCD, you had several months of significant improvement, suggests that as your antibody production to certain foods declined, your immune system began to respond to another food sensitivity and it began to ramp up the production of antibodies to it. IOW, you may have many food sensitivities -- more than a reasonable diet can accommodate, at least until some healing occurs. Most members in this situation find it necessary to use budesonide in order to help their inflammation settle down to the point where their diet works.
I'm not suggesting that you do this, since I can't recommend a medical treatment, but are you aware that you can order generic budesonide from an overseas pharmacy at a very reasonable cost (without a prescription)? Most members who can't afford the cost of domestic budesonide, or can't afford their insurance co-pay for the drug, order it from the link below. It allows them to get their life back, and it seems to work just as well as the name brand product.
https://www.alldaychemist.com/1447-budez-cr-3mg.html
Tex
Of course, the blood tests have such low sensitivity that they are notorious for missing antibodies due to food sensitivities, but even though most of your results suggest that you were not having an autoimmune reaction at the time of the test, the IgG result clearly shows that you were experiencing a chronic (long-term) reaction to gluten.
The impression I get is that the results indicate either non-celiac gluten sensitivity, or the early stages of celiac disease. By adopting the GF diet, you have presumably stopped the progression of celiac disease, so if you were to do a gluten challenge in the hopes of yielding a positive celiac test result, it would almost surely take anywhere from several months to several years of eating gluten before those results would all be positive for a celiac diagnosis. The celiac diagnostic procedure is pitifully inadequate, but virtually all doctors fail to recognize that issue (at least they continue to pretend that it's not a problem).
The fact that each time you adopted either the paleo diet or the SCD, you had several months of significant improvement, suggests that as your antibody production to certain foods declined, your immune system began to respond to another food sensitivity and it began to ramp up the production of antibodies to it. IOW, you may have many food sensitivities -- more than a reasonable diet can accommodate, at least until some healing occurs. Most members in this situation find it necessary to use budesonide in order to help their inflammation settle down to the point where their diet works.
I'm not suggesting that you do this, since I can't recommend a medical treatment, but are you aware that you can order generic budesonide from an overseas pharmacy at a very reasonable cost (without a prescription)? Most members who can't afford the cost of domestic budesonide, or can't afford their insurance co-pay for the drug, order it from the link below. It allows them to get their life back, and it seems to work just as well as the name brand product.
https://www.alldaychemist.com/1447-budez-cr-3mg.html
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.