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My Gi Doctor Said My Ulcerative Colitis Is Not At All Related To Gluten

bumblebby

By bumblebby
in Coping with Celiac Disease

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bumblebby Newbie
bumblebby
Posted

I have had ulcerative colitis for 14 years. I have gone through more hospital stays then I can count, surgerys, different meds...you get the idea. It has been horrible. In October 2006 I decided to go Gluten free and see what happened as I was not responding to steroids as I once used to. My symptoms subsided substancially in a week and were gone in two weeks. I have been gluten free ever since and am now on no meds for the UC. (YEAH!)

So, last time I went to see my GI doc, I of course mentioned my discovery and the results. He said it was a coincidence. He said celiac disease has nothing to do with UC. I find that hard to believe.

Any thoughts or experiences with doctors that believe this?

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I can only think of one explanation: your doctor is an idiot.

happygirl Collaborator
happygirl
Posted

I second what Fiddle Faddle said :)

I don't know if you actually have Celiac Disease or not, but dietary modifications can play an important role in the management of IBDs. Open Original Shared Link

"Patients with ulcerative colitis should eliminate any foods or beverages from their diet that seem to make symptoms worse." (Obviously, you know this).

Anyways, I am happy that you have found relief from your symptoms by a gluten free diet!!!!!!! What a wonderful thing!

Sillyyakdidi Apprentice
Sillyyakdidi
Posted
I have had ulcerative colitis for 14 years. I have gone through more hospital stays then I can count, surgerys, different meds...you get the idea. It has been horrible. In October 2006 I decided to go Gluten free and see what happened as I was not responding to steroids as I once used to. My symptoms subsided substancially in a week and were gone in two weeks. I have been gluten free ever since and am now on no meds for the UC. (YEAH!)

So, last time I went to see my GI doc, I of course mentioned my discovery and the results. He said it was a coincidence. He said celiac disease has nothing to do with UC. I find that hard to believe.

Any thoughts or experiences with doctors that believe this?

get a new doctor. the deal with UC and celiac, is, if you have celiac ALSO, and your upper intestines are flattened and not propperly digesting anything, and sending things down further practically whole in an indigested form, of course they will FURTHER aggravate your already irratated body that has UC. So, yes, you can have one without the other, and one doesnt cause the other, but they sure do aggravate eachother!!! I'm glad you are gluten-free and feeling better, and I'm sorry your doctor didn't help you!

4getgluten Rookie
4getgluten
Posted

I think the medical community still has a lot to learn about digestive diseases and food intolerances. I

Ursa Major Collaborator
Ursa Major
Posted

Your doctor obviously doesn't know what he is talking about (the majority don't it seems), ignore him. You know that the gluten-free diet is working, good for you for figuring it out, stick with it! I am glad you're better.

bumblebby Newbie
bumblebby
Posted
  • Author
Your doctor obviously doesn't know what he is talking about (the majority don't it seems), ignore him. You know that the gluten-free diet is working, good for you for figuring it out, stick with it! I am glad you're better.

Thanks for Replying Everyone!

I do not have a positive diagnosis of Celiac. Over the years I have believed diet played a role and have tried eliminating dairy, refined sugars, etc. Nothing made a difference until I went gluten free. I could kick myself in the butt for not discovering this sooner. This is the third GI doc I have had, nobody ever suggested a gluten free diet to me. This particular doctor though was so quick to dismiss my findings, it kinda pissed me off.

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SillyBoo Newbie
SillyBoo
Posted

I don't understand how ANY medical condition of the digestive system can NOT have something to do with the foods one is consuming. I heard the same thing 13 years ago when I landed in an Eastern European hospital 6 months after arriving (and drastically changing my diet to eat like the locals). Strange!

tarnalberry Community Regular
tarnalberry
Posted
I don't understand how ANY medical condition of the digestive system can NOT have something to do with the foods one is consuming.

While I can imagine one or two - absolutely, it seems the first culprit suspected should be food!

bumblebby Newbie
bumblebby
Posted
  • Author

I too have always believed food played a role in my condition. The problem has been figuring out all the foods I should be avoiding. It is not easy. I do believe after all these years I am there or almost there though.

That same doctor is trying to get me to go on Pentasa (5 ASA) as he believes it will help keep me in remission. I do not want to take medications anymore. I am sick of it and believe it is unnecessary, especially since I can't remember feeling this good.

hathor Contributor
hathor
Posted

To Fiddle-Faddle's logical conclusion -- your doctor is an idiot -- I would add Dr. McDougall's comment:

"The contents of the large bowel are the primary determinant of the health and function of the intestine, and a spastic colon is no exception to this rule. Few physicians have even an elementary understanding of the influence that foods can have on the body: they are unprepared to deal with health and disease from this fundamental perspective.

Possibly it is too simple and obvious a fact that the contents of the large intestine will determine whether or not the stool will be large or small, hard or soft, and if defecation will be painful or not, and whether or not blood and mucus will accompany passage of the stool. (This is a clear case of not seeing the forest for the trees.) Could the fear that the very foods the physicians and dietitians themselves eat and feed to their families can also be the cause of their patient's illness be too personal a threat for most health professionals? The "high-tech" drug solution would be much more easy to accept for most men and women of science." Open Original Shared Link

I won't go into his specific dietary suggestions, since you are doing fine now. (You can read them for yourself if you wish. Open Original Shared Link )

You say you've had problems finding all the foods you should avoid. If you have any problems in the future (I hope not!) and want a link to one explanation of how to do an elimination diet, or want to know now, let me know. It can take a long time, but not as long as 14 years. <_<

I find it crazy that no doctor in 14 years ever broached the idea of avoiding wheat. Dr. McDougall notes: "Foods from the plant kingdom that are notorious for inducing "allergic-type" reactions are wheat and citrus fruits, and they should be avoided initially when trying to end bowel distress."

In addition to the ignorance/threat factor, there is also a financial motive possibly present here. If you aren't on medication, you don't have to keep going back to the doctor, now do you? At least around here, doctors will only give you so many refills and then require you to go back for an appointment, even if the appointment consists of nothing more than, "It's working, huh? Well, let's continuing it then." Even if the crass financial motive isn't present, perhaps he just isn't comfortable with the fact that you solved your problem, not him. If you take a drug he prescribes, then your continued good health, in his mind, would be due to the prescription.

Many doctors would rather treat conditions with medication or other interventions that they control than to try diet, exercise, or anything else the patient can do for him or herself. You don't have to take any medication you don't want and don't need. My husband, for instance, had problems with poor sleep, GERD, and high cholesterol, and the doctor wanted to put him on medication for all three. DH wanted to try diet first (the diet I told him about -- dear doc was clueless), and it was able to cope with all three problems. The GERD went away in 2 days!

Any drug can have side effects. No reason to take it if you don't have to. Are you already keeping a food journal? This could be useful in isolating what might be causing any new flare up. But you've gone long enough, you may have solved your problem. I hope so :D

Good for you for being so proactive. What led you to try going gluten-free for your condition?

Nancym Enthusiast
Nancym
Posted

Well, we know what opinions are similar to, because everyone has one. :P Anyway, your doctor is entitled to his opinion but there are other gastroenterologists out there that know there is a connection. Congratulations on feeling better!

bumblebby Newbie
bumblebby
Posted
  • Author

Hathor-thanks for the feedback!

I had been told in the past to try a low fiber diet or just eat white bread not whole wheat that sort of thing but never to eliminate wheat or gluten altogether.

I had a bad flare up from May 2006 to October 2006. I was not responding to steriods like I once used to. I guess you could say I was desperate so once again I went back to what I was eating. I went online and was researching food intolerances and such when I came across Celiac disease. The more I read, the more I thought "I need to try a gluten free diet". For example, I had my gall bladder taken out when I was 20 and at the time was not having a flare up. I read about how many people with gluten intolerance have gall bladder problems.

So here I am. I'll add that I am 21 weeks pregnant and this pregnancy is going so well. Just the fact that I have made it this far without a miscarriage is wonderful.

Thank You for the link for the specific dietary recommendations. I am going to read it now.

hathor Contributor
hathor
Posted

Interesting. I started McDougall's diet to lose weight, but then had some health problems clear up as well. One was with my gall bladder (my mother and brother both have theirs out). I hadn't recognized the connection. I wonder how the two are related -- whether one causes the other or some other factor causes both.

Anyway, being pregnant is a good reason for avoiding unnecessary medication. I'm glad everything is going well.

If McDougalling is of interest after you read what I linked to, there is a book he's written for women that includes a chapter on pregnancy. It is available as an ebook (Open Original Shared Link) as well as paper. You could probably find it eventually through exploring the web site but there is a lot to go through. I think there are several pregnant women on the discussion board there as well.

NicoleAJ Enthusiast
NicoleAJ
Posted

First of all, I agree that this doctor did not handle everything very well--it is surprising that no one would do a celiac panel on you or an endoscopy to see if gluten was causing additional problems for you. On the other hand, the doctor isn't totally wrong in saying that there's no examined connection between UC and celiac disease--there very well might be a link, but we just don't have extensive research that tells us how the two diseases team up on your body to make your life hell. I was diagnosed with celiac 2 1/2 years ago, and I responded really well to the gluten free diet, but, in addition to celiac, I've recently been diagnosed with UC. At first I kept thinking i might be having abnormal gluten reactions, but then I realized that something was truly wrong that had nothing to do with gluten (since I'm so obsessive about my food being gluten free anyway). UC feels different than celiac--to me it's worse because there's no cure; it's not about avoiding a known offender, but rather about getting sick whether you're trying hard to get better or not.

Bumblebby, you are truly blessed to be having such a positive pregancy experience with UC--that certainly gives me hope for the future when I want to get pregnant since so many women with UC have serious complications early in the pregnancy (as you know). You should definitely stay on the gluten free diet since it seems to have induced your remission. That being said, how were you diagnosed with UC in the first place? If you've had such an overwhelmingly positive dietary response, I wonder if they just missed a potential celiac diagnosis years ago when you first started having trouble. Though we don't know the exact connection between the two diseases, so many of the symptoms coincide that often someone has one disease and they misdiagnose it for the other. If you don't have another flare-up, the gluten free diet could very well be your answer, but if you do, that would be the time that I would imagine it would be best to return to the meds. I'm sure your doctor has the best of intentions in trying to get you onto a UC medicine to maintain the remission, but no one will watch out for your health quite as well as you do yourself, and it sounds like you've got it pretty well under control right now. Congrats!

bumblebby Newbie
bumblebby
Posted
  • Author
First of all, I agree that this doctor did not handle everything very well--it is surprising that no one would do a celiac panel on you or an endoscopy to see if gluten was causing additional problems for you. On the other hand, the doctor isn't totally wrong in saying that there's no examined connection between UC and celiac disease--there very well might be a link, but we just don't have extensive research that tells us how the two diseases team up on your body to make your life hell. I was diagnosed with celiac 2 1/2 years ago, and I responded really well to the gluten free diet, but, in addition to celiac, I've recently been diagnosed with UC. At first I kept thinking i might be having abnormal gluten reactions, but then I realized that something was truly wrong that had nothing to do with gluten (since I'm so obsessive about my food being gluten free anyway). UC feels different than celiac--to me it's worse because there's no cure; it's not about avoiding a known offender, but rather about getting sick whether you're trying hard to get better or not.

Bumblebby, you are truly blessed to be having such a positive pregancy experience with UC--that certainly gives me hope for the future when I want to get pregnant since so many women with UC have serious complications early in the pregnancy (as you know). You should definitely stay on the gluten free diet since it seems to have induced your remission. That being said, how were you diagnosed with UC in the first place? If you've had such an overwhelmingly positive dietary response, I wonder if they just missed a potential celiac diagnosis years ago when you first started having trouble. Though we don't know the exact connection between the two diseases, so many of the symptoms coincide that often someone has one disease and they misdiagnose it for the other. If you don't have another flare-up, the gluten free diet could very well be your answer, but if you do, that would be the time that I would imagine it would be best to return to the meds. I'm sure your doctor has the best of intentions in trying to get you onto a UC medicine to maintain the remission, but no one will watch out for your health quite as well as you do yourself, and it sounds like you've got it pretty well under control right now. Congrats!

NicoleAJ- Sorry to hear you were recently diagnosed with UC. I was about 17 when I started having problems, cramping and diarrhea which over the course of a few months developed into bloody diarrhea. I was referred by my family doctor to a GI and he did a colonoscopy and diagnosed UC. I have, over the course of the last 14 years spent more time in the hospital then anybody I know. My ds was a preemie and I have had two miscarriages so I have yet to have a full term healthy baby but, here is hoping! I certainly never gave up hope that I'd be a Mom one day.

If I had another flare up while gluten free I certainly would use steroids to try to get it under control and carefully introduce any foods back into my life. I do not want to take maintenance drugs right now because this pregnancy is going well and I feel good. I was just surprised how fast my GI said it was a coincidence, he wouldn't even entertain the idea there could be a link.

Thanks for the feedback!!

NicoleAJ Enthusiast
NicoleAJ
Posted
NicoleAJ- Sorry to hear you were recently diagnosed with UC. I was about 17 when I started having problems, cramping and diarrhea which over the course of a few months developed into bloody diarrhea. I was referred by my family doctor to a GI and he did a colonoscopy and diagnosed UC. I have, over the course of the last 14 years spent more time in the hospital then anybody I know. My ds was a preemie and I have had two miscarriages so I have yet to have a full term healthy baby but, here is hoping! I certainly never gave up hope that I'd be a Mom one day.

If I had another flare up while gluten free I certainly would use steroids to try to get it under control and carefully introduce any foods back into my life. I do not want to take maintenance drugs right now because this pregnancy is going well and I feel good. I was just surprised how fast my GI said it was a coincidence, he wouldn't even entertain the idea there could be a link.

Thanks for the feedback!!

Bumblebby--what an aweful ordeal for you to have to go through. I'm so glad that things are going well for you right now, and I totally see your perspecitve in not wanting to take the drugs now. GIs often do say surprising things--I like my GI a lot, but I don't necessarily think he has all of the most recent research. I can't wait until my graduate program is over, so I can move to a metropolitan area where I will have plenty of options for doctors--trying to get pregnant will have to wait until then (I live in a beautiful area but it's a three hour drive to a major city where I can get the treatment I need). Again, best wishes to you and your family.

nutralady2001 Newbie
nutralady2001
Posted

I was diagnosed with IBS at the age of 21 in 1969 after suffering from the age of 12

I am now wondering whether gluten intolerance has been a part of the problem all along. I have been gluten free now for 3 months and have noticed a huge difference

tavalon Newbie
tavalon
Posted
I have had ulcerative colitis for 14 years. I have gone through more hospital stays then I can count, surgerys, different meds...you get the idea. It has been horrible. In October 2006 I decided to go Gluten free and see what happened as I was not responding to steroids as I once used to. My symptoms subsided substancially in a week and were gone in two weeks. I have been gluten free ever since and am now on no meds for the UC. (YEAH!)

So, last time I went to see my GI doc, I of course mentioned my discovery and the results. He said it was a coincidence. He said celiac disease has nothing to do with UC. I find that hard to believe.

Any thoughts or experiences with doctors that believe this?

It's incredibly hard for me to believe that any disease of the digestive system is not in some way connected to the foods we eat, whether by exacerbation or causation. That isn't rocket science, it's just plain common sense. I'm a nurse, though, and I've found that common sense in doctors is a rare commodity. Unless this doctor has a lot of other redeeming qualities, I would say it's time to fire him. Don't forget, you are the employer in this situation. Find someone who will work with you rather than talking down to you, especially when it's clear that he knows so much less than you do.

Snort! Celiac has nothing to do with UC. It would be funny if it weren't so damn stupid.

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