[wontgiveup]

Hi All,

I'm fairly new to this site. Been to so many doctors with my daughter for 2 years and still trying to find answers. As you all are aware, it is so difficult to get a doctor to discuss nutrition and/or supplements. My daughter was diagnosed with Ulcerative Colitis and a liver disease 2 years ago. Since then the diagnosis has gone back and forth from Crohns to UC repeatedly. Tried every medication know for these diseases and sometimes five at a time. At one point she was taking 22 pills a day. Her white blood count is so low due to the imunosuppresents. I started to do my own research on Celiac since the doctors never tested her. The doctor she has now, just did some testing for the first time and it came back negative. From what I've been reading, that is not too uncommon. I have to believe that something must be going on in her body that is continuously aggravating her intestines. Why else would none of these medicines work after two years?

We went gluten free almost 3 weeks ago. She has been coming off of some of her meds and her condition is stable which is a good sign considering at one point she spent a week in the hospital due to dehydration, extremely high fever and bleeding. It's so hard to tell if it is the diet or she is just responding to some medicines. I am a thorough believer that we have to heal the body, not just treat the symptoms and will do anything to help my daughter live an easier life. We're getting used to the gluten free concept.....although it can be a bit challenging to get what you need in your pantry to cook all your meals. Luckily, she loves to cook.

My big question is this. Before we started the diet, she used to have blood and mucus (occasionally) in her diarrhea which has been a permanent thing for two years. Bleeding seems to have stopped, but on the gluten free diet, she has a lot of mucus and things seem to digest less. She went away on a school trip and had to eat some food containing gluten and she found that she had less mucus and more form to her stool. This just seems a little backward to me.
I can't seem to find any answers as to what the diet does to the intestines that may be causing all of this mucus and is this a good thing or a bad thing. We don't want to stop since she has been sticking with it for so long now, but it just doesn't make logical sense to me.

Has anyone had this reaction to the diet change? Are there any resources available to look into this since the doctors don't seem to want to acknowledge diet as possibly the culprit of her problem. I'm considering going back to the naturapth we saw about a year ago.

Any help would be greatly appreciated.

[OliveBranch]

That does seem strange to me. Had your daughter also started a new medicine shortly before the trip when she ate gluten? If she had just started Prednisone, for example, she could have had sudden improvement despite the gluten. Or, perhaps she is having more mucous in her stool while gluten-free due to something else she's eating (a gluten substitute probably) that her system is not accustomed to. Do you think this is possible? My understanding is that the bowel produces mucous in order to let aggravating items through the bowel more smoothly; it's not such a bad thing in itself.

If it is helpful: I was diagnosed with Crohn's at age 12 (am now 27), and have been through many meds for it. For the past 5 years I have been on TNF-alpha inhibitors--first Remicade and now Humira. Is your daughter on one of these? They are best avoided if possible due to potential side effects, but they do work wonders if you get to that point. My primary Crohn's symptom was frequent, urgent, bloody diarrhea (and all the misery that entails), and these drugs completely eradicate it. In my case, I believe I have developed gluten intolerance on top of the Crohn's (the gluten intolerance presents with non-GI symptoms for me), and the Humira won't help with that.

Sorry not to have more direct advice; hopefully you can get some ideas from my situation. Perhaps you need to find the right drug to handle the UC/Crohn's and induce remission (while staying gluten-free), and after that the gluten-free diet might help to maintain the remission. But I would definitely give the gluten-free diet some more time to work, if the only problem is mucous.

Good luck to you both!

wontgiveup, on Nov 9 2009, 10:10 PM, said:

Hi All,

I'm fairly new to this site. Been to so many doctors with my daughter for 2 years and still trying to find answers. As you all are aware, it is so difficult to get a doctor to discuss nutrition and/or supplements. My daughter was diagnosed with Ulcerative Colitis and a liver disease 2 years ago. Since then the diagnosis has gone back and forth from Crohns to UC repeatedly. Tried every medication know for these diseases and sometimes five at a time. At one point she was taking 22 pills a day. Her white blood count is so low due to the imunosuppresents. I started to do my own research on Celiac since the doctors never tested her. The doctor she has now, just did some testing for the first time and it came back negative. From what I've been reading, that is not too uncommon. I have to believe that something must be going on in her body that is continuously aggravating her intestines. Why else would none of these medicines work after two years?

We went gluten free almost 3 weeks ago. She has been coming off of some of her meds and her condition is stable which is a good sign considering at one point she spent a week in the hospital due to dehydration, extremely high fever and bleeding. It's so hard to tell if it is the diet or she is just responding to some medicines. I am a thorough believer that we have to heal the body, not just treat the symptoms and will do anything to help my daughter live an easier life. We're getting used to the gluten free concept.....although it can be a bit challenging to get what you need in your pantry to cook all your meals. Luckily, she loves to cook.

My big question is this. Before we started the diet, she used to have blood and mucus (occasionally) in her diarrhea which has been a permanent thing for two years. Bleeding seems to have stopped, but on the gluten free diet, she has a lot of mucus and things seem to digest less. She went away on a school trip and had to eat some food containing gluten and she found that she had less mucus and more form to her stool. This just seems a little backward to me.
I can't seem to find any answers as to what the diet does to the intestines that may be causing all of this mucus and is this a good thing or a bad thing. We don't want to stop since she has been sticking with it for so long now, but it just doesn't make logical sense to me.

Has anyone had this reaction to the diet change? Are there any resources available to look into this since the doctors don't seem to want to acknowledge diet as possibly the culprit of her problem. I'm considering going back to the naturapth we saw about a year ago.

Any help would be greatly appreciated.

[Karrin]

wontgiveup, on Nov 9 2009, 09:10 PM, said:

Hi All,

I'm fairly new to this site. Been to so many doctors with my daughter for 2 years and still trying to find answers. As you all are aware, it is so difficult to get a doctor to discuss nutrition and/or supplements. My daughter was diagnosed with Ulcerative Colitis and a liver disease 2 years ago. Since then the diagnosis has gone back and forth from Crohns to UC repeatedly. Tried every medication know for these diseases and sometimes five at a time. At one point she was taking 22 pills a day. Her white blood count is so low due to the imunosuppresents. I started to do my own research on Celiac since the doctors never tested her. The doctor she has now, just did some testing for the first time and it came back negative. From what I've been reading, that is not too uncommon. I have to believe that something must be going on in her body that is continuously aggravating her intestines. Why else would none of these medicines work after two years?

We went gluten free almost 3 weeks ago. She has been coming off of some of her meds and her condition is stable which is a good sign considering at one point she spent a week in the hospital due to dehydration, extremely high fever and bleeding. It's so hard to tell if it is the diet or she is just responding to some medicines. I am a thorough believer that we have to heal the body, not just treat the symptoms and will do anything to help my daughter live an easier life. We're getting used to the gluten free concept.....although it can be a bit challenging to get what you need in your pantry to cook all your meals. Luckily, she loves to cook.

My big question is this. Before we started the diet, she used to have blood and mucus (occasionally) in her diarrhea which has been a permanent thing for two years. Bleeding seems to have stopped, but on the gluten free diet, she has a lot of mucus and things seem to digest less. She went away on a school trip and had to eat some food containing gluten and she found that she had less mucus and more form to her stool. This just seems a little backward to me.
I can't seem to find any answers as to what the diet does to the intestines that may be causing all of this mucus and is this a good thing or a bad thing. We don't want to stop since she has been sticking with it for so long now, but it just doesn't make logical sense to me.

Has anyone had this reaction to the diet change? Are there any resources available to look into this since the doctors don't seem to want to acknowledge diet as possibly the culprit of her problem. I'm considering going back to the naturapth we saw about a year ago.

Any help would be greatly appreciated.

I used to get mucus in my stool as well, more so after I started the diet. My stool also seemed to soften a bit. I think it might have been due to a hemmoroid however, which has gone away over the months. I was chronically constipated before going gluten free and that is a contributing factor to hemmoroids. It might be worth checking? Hope she feels better.

[ang1e0251]

I know at least one person on the Specific Carbohydrate Diet has a teeenage son with UC. She went on that diet with him to minimize the drugs he might take. You might check that out. There is quite a long thread on this forum where people discuss this approach.

[mommida]

Has she been tested for any eosinophilic gastro issues. My daughter has eosinophilic esophagitis so we see the "mucus" on her tonsils. The mucus harderns into "tonsil stones" and her breath has a distinctive odor. This is not an easy diagnoses as eosinophils are supposed to be rare and it sounds like the medication she is on is lowering the white blood cell counts.

[wschmucks]

I agree on the SCD she should def try it. Some people with UC or Chrons cannot tollerate gluten simply because it is harder on youre intestines. if your daughter was dx wiht chrons/ UC with a small bowel follow through I cant imagine it being misdiagnosed (meaning celiac would never look like chrons on a small bowel follow through). It is very rare to have both chrons and celiac, but it does happen. You should try out the SCD and see how it goes. It is a very hard diet but it worth it for her health. Good luck!

[OliveBranch]

Not sure I agree that the combination of Celiac and Crohn's is so rare; here's an article posted on this site to the contrary:
http://www.celiac.com/articles/915/1/Celia...ease/Page1.html

I also think it's very likely that many patients already diagnosed with Crohn's would have a hard time getting a celiac diagnosis because doctors tend to attribute ALL symptoms of any sort to the Crohn's (I know this from experience), even when it's completely unreasonable. So there are probably lots of people with Crohn's (or UC) out there with no idea that they have Celiac, too.

But I do agree that the SCD may be helpful one way or the other!

wschmucks, on Nov 11 2009, 01:02 PM, said:

I agree on the SCD she should def try it. Some people with UC or Chrons cannot tollerate gluten simply because it is harder on youre intestines. if your daughter was dx wiht chrons/ UC with a small bowel follow through I cant imagine it being misdiagnosed (meaning celiac would never look like chrons on a small bowel follow through). It is very rare to have both chrons and celiac, but it does happen. You should try out the SCD and see how it goes. It is a very hard diet but it worth it for her health. Good luck!

[wontgiveup]

OliveBranch, on Nov 10 2009, 06:43 AM, said:

That does seem strange to me. Had your daughter also started a new medicine shortly before the trip when she ate gluten? If she had just started Prednisone, for example, she could have had sudden improvement despite the gluten. Or, perhaps she is having more mucous in her stool while gluten-free due to something else she's eating (a gluten substitute probably) that her system is not accustomed to. Do you think this is possible? My understanding is that the bowel produces mucous in order to let aggravating items through the bowel more smoothly; it's not such a bad thing in itself.

If it is helpful: I was diagnosed with Crohn's at age 12 (am now 27), and have been through many meds for it. For the past 5 years I have been on TNF-alpha inhibitors--first Remicade and now Humira. Is your daughter on one of these? They are best avoided if possible due to potential side effects, but they do work wonders if you get to that point. My primary Crohn's symptom was frequent, urgent, bloody diarrhea (and all the misery that entails), and these drugs completely eradicate it. In my case, I believe I have developed gluten intolerance on top of the Crohn's (the gluten intolerance presents with non-GI symptoms for me), and the Humira won't help with that.

Sorry not to have more direct advice; hopefully you can get some ideas from my situation. Perhaps you need to find the right drug to handle the UC/Crohn's and induce remission (while staying gluten-free), and after that the gluten-free diet might help to maintain the remission. But I would definitely give the gluten-free diet some more time to work, if the only problem is mucous.

Good luck to you both!

[wontgiveup]

Thanks for the insight. Sounds like you have been suffering with this disease for a long time and have covered the wide array of meds. My daughter has done a very long stretch of steroids and just came off a few months ago. The side effects are miserable. She tried Remicade about a year or so ago and by the third dose had a severe allergic reaction and we had to stop. I think that the doctors really messed on that one. She did not seem to respond to the first two doses and they waited nearly 6 weeks before administering another. I've been told that the time lapse was too long and she may have built up antibodies in that time period and rejected it. We then switched to Humira about 6 months ago. I really hate to have her at such a young age on these strong medications, but we tried just about every other medicine out there. Flagyl worked well, but she started to have neurological problems and had tingling and loss of feeling in her hands and feet. So she went off of that and they stepped up Humira to once a week instead of every two weeks.

It's so hard to not get discouraged that even on the strongest meds possible for Ulcerative colitis/Crohns, she still has not gone back to a normal state. I guess that's why I have to believe that something else is going on to continuously aggravate her condition. Allergy, sensitivity....I don't know. Humira was supposed to be the cure all and it's not working. We gave up on the doctor at Johns Hopkins because she gave up and was ready to do surgery. At 16, I just couldn't see having them start to take parts of her intestines. I tend to think that maybe she is at an age where hormones and other chemicals are constantly changing and maybe that has made it difficult for her body also.
I'm determined to keep trying diet and supplements and keep searching every avenue I can. We started the Gluten free to try to get some improvement so they wouldn't double her Humira. I wonder if all the mucous could be the lining healing. Maybe that is just wishful thinking. I think I may go to the Naturopath to see if she can explain it to me. Am I crazy to think that there is something that has to work?

[LuvMoosic4life]

I say for a while, take ALL processed foods out of the diet and eat nothing but whole foods. It sucks at first, but really, this is the only thing that had worked for me. I also got more mucus in my stools after going gluten-free, but it cleared up when I stopped all the specialty gluten-free foods, I think sometimes they are just as bad as glutenous foods depending how often you eat them. I gradually started adding certain foods back into my diet when my system felt more normal. Some things I can now tolerate and others I cant. it takes a LOONG time, but eating a diet mostly of whole ffods now is what has saved me.

oh, I also drink kombucha, take probiotics and drink distilled water. I have definitly noticed improvement in how I feel by avoiding tap water!!!

[Nat33]

I was diagnosed with Celiac Disease about 7 months ago. I had been having multiple problems stomach and digestive problems, some of which were constipation, feeling naucious, not being hungry, losing 25 pounds without trying in three months, and constantly feeling sick, bloated and tired. I tested negative for Celiac Disease. The doctor told me this was not uncommon, that the test was not a reliable test at all. So my GI doctor did an endoscopy. In case you don't know what it is, it's a simple procedure where they put you to sleep for about half an hour and put a camera down your throat into your intestines, where the doctor can easily tell if you have Celiac Disease or not by the villi (fingerlike, they line your intestines and absorb nutrients.) When the fingerlike villi are more like nubs, they've been damaged by the Gluten. Like I said, I tested negative, but my villi were damaged. So I went on a Gluten free diet and within days I was feeling SO much better. For four months straight I had not gone two days straight without catching some kind of cold or stomach virus, and I felt naucious daily. After going Gluten-free the nauciousness ended and I went months without having any colds or viruses at all. I strongly encourage you to get an upper endoscopy done so they will know with more certainty whether your child as Celiac Disease or not. Hope this helps, and I hope she feels a lot better soon!!!