Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

poopedout

Getting Desperate - Really Need Help

Recommended Posts

I posted before under the topic "wrong test for celiac?" I have had diarrhea daily for about eight months. On December 30th I started a gluten-free diet - my idea, I did not consult a doctor. There was some improvement after two weeks, real improvement after two months which lasted for a month. Then it got worse again and I saw the doctor on April 30th. He told me I am too old to have celiac disease. He did not order any tests for celiac and ordered a colonogram and referred me to the GI clinic. I did the bowel prep for the colonogram which was very difficult. I had 30 bowel movements in 24 hours and became severely dehydrated and collapsed unconscious on the floor the night before the test. They found a small polyp on the colonogram which he does not think could be causing such severe diarrhea. However he wants me to have a colonoscopy to have the polyp removed. I told him I don't think I could do that bowel prep again, not right now anyway. I am down to 108 pounds and am not feeling strong enough to go through that again so soon. I am also concerned about what will happen if I have the polyp removed and I continue with the diarrhea afterward and what effect that would have on the area where the polyp is removed - perhaps bleeding or something else. I still have not been seen by the GI clinic and I want to see them before a colonoscopy as I want to know what is causing the diarrhea. I think the polyp is a red herring and 50% of people my age probably would have a polyp found if they had a colonogram. I still think I have celiac, but the tests won't be valid because of being on a gluten-free diet for over six months. I am considering going off my gluten free diet to see what happens. I would really appreciate any opinions or advice. My doctor was supposed to call me three or four days ago but he has not so I am feeling like I have no one to help me.

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I don't know how old you are, but I didn't exhibit ANY symptoms till I was 48 years old and was diagnosed just a few months later. The fact that a gluten-free diet worked makes me wonder if you're not reacting to another food, like dairy. I've been gluten-free for 9 years and only recently started having diarrhea again... and all signs point to dairy!

Just read some of people's info space and see just how many foods celiacs can be sensitive to! You might go back to some real basics... lean meats, fruits, veggies, and rice and then start reintroducing foods slowly... only a few at a time... to see if something specific isn't zapping you.


luvs2eat

Living in the beautiful Ozark mountains in Arkansas

positive blood tests and later, positive biopsy

diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day

Dairy free since July 2010 and NOT happy about it!!

Share this post


Link to post
Share on other sites

I don't know how old you are, but I didn't exhibit ANY symptoms till I was 48 years old and was diagnosed just a few months later. The fact that a gluten-free diet worked makes me wonder if you're not reacting to another food, like dairy. I've been gluten-free for 9 years and only recently started having diarrhea again... and all signs point to dairy!

Just read some of people's info space and see just how many foods celiacs can be sensitive to! You might go back to some real basics... lean meats, fruits, veggies, and rice and then start reintroducing foods slowly... only a few at a time... to see if something specific isn't zapping you.

I am 69. I am pretty sure it is not dairy as the only dairy I have is aged cheddar and probiotic yogurt. I probably had symptoms for years before I tried the gluten-free diet, but I did not realize what it was. I would have diarrhea after eating something but thought it was too much cheese or was too spicy. I did have a bad episode recently and I found out that my husband forgot to use the wheat-free soya sauce. I am keeping a record now of what I eat and what happens afterward. Halibut seems to be bad for some reason. Another one is beef broth which has some gluten in it. I thought it was not enough to cause a problem, but now I think it is. My husband boils it down to concentrate it and then makes a sauce with it. I also had a bad episode of diarrhea after eating hot genoa salami and hot calabrese salami. It was delicious though.

Share this post


Link to post
Share on other sites

I posted before under the topic "wrong test for celiac?" I have had diarrhea daily for about eight months. On December 30th I started a gluten-free diet - my idea, I did not consult a doctor. There was some improvement after two weeks, real improvement after two months which lasted for a month. Then it got worse again and I saw the doctor on April 30th. He told me I am too old to have celiac disease.

Your doctor sounds very narrow minded. No one is too old to have celiac disease. You could have recently developed it or had it all your life and not had symptoms. You could also have gluten intolerance, which is not Celiac. Time to find a new doctor or educate the one you have.

Good luck!

Share this post


Link to post
Share on other sites

Your doctor sounds very narrow minded. No one is too old to have celiac disease. You could have recently developed it or had it all your life and not had symptoms. You could also have gluten intolerance, which is not Celiac. Time to find a new doctor or educate the one you have.

Good luck!

I cannot get a new doctor. It is the Canadian health care system.

Share this post


Link to post
Share on other sites

Your doctor does NOT understand a thing about celiac disease! A person can be a celiac for his/her entire life, but the symptoms can occur early in life, sporadically, not at all, or later in life. My mother didn't have symptoms until she was 67, and even though I've had nutritional deficiencies since I was 11, I didn't have GI symptoms until I was 47. A lot of doctors were taught that only babies and children have celiac. Your doctor needs to be informed about celiac. However, now that you've been on a gluten-free diet for so long, your tests would probably come out negative anyway. In such a case, I would strongly recommend that you remain on a gluten-free diet and be careful about any hidden contamination. Many people with celiac are also unable to eat dairy or soy. Some of us can't tolerate oats either--not even the gluten-free kind. Also, remember that supplements and medications can contain hidden gluten. Lastly, you should switch to gluten-free shampoo, creme rinse, moisturizers, and makeup (especially lipstick), because you can accidentally ingest them.

Lastly, it's possible that the prep solution that you used for your procedure contained gluten. The next time you undergo this type of procedure, call the lab that makes the solution to ask whether it does, in fact, contain gluten. Your response seems to have been a bit extreme...that's worrisome.

Share this post


Link to post
Share on other sites

It sounds like you have not been strictly gluten free (soy sauce and beef broth). Since you had initial improvement, then declined again, I would guess it is because you are getting trace amounts of gluten. Since you are probably very sensitive, I would recommend going completely dairy free as well.

My son was gluten free for over 6 months before he started having issues with dairy. The only dairy he was eating was yogurt and cheddar cheese- both of which were causing him severe D. It really couldn't hurt to try dairy free, and also you need to be VERY strict with the diet.

I hope you improve soon.


Gluten free is not so bad! If you are new, hang it there, it gets easier!

Share this post


Link to post
Share on other sites

It sounds like you have not been strictly gluten free (soy sauce and beef broth). Since you had initial improvement, then declined again, I would guess it is because you are getting trace amounts of gluten. Since you are probably very sensitive, I would recommend going completely dairy free as well.

My son was gluten free for over 6 months before he started having issues with dairy. The only dairy he was eating was yogurt and cheddar cheese- both of which were causing him severe D. It really couldn't hurt to try dairy free, and also you need to be VERY strict with the diet.

I hope you improve soon.

I had difficulty believing that small amounts of gluten could be a problem so I would have the sauce with the concentrated beef broth and the soy sauce. I did recently buy some wheat free soy sauce and we are supposed to be using that but my husband forgot. I ate lots of gluten before - pasta, bread (I used to make my own), pizza so it did not make sense to me. Our family had a talk about this last night and the decision was to be absolutely strict about it for the next two weeks and see if there is some improvement. I had another triple whammy last night and I know I had no gluten in the last three or four days.

Share this post


Link to post
Share on other sites

I had difficulty believing that small amounts of gluten could be a problem so I would have the sauce with the concentrated beef broth and the soy sauce. I did recently buy some wheat free soy sauce and we are supposed to be using that but my husband forgot. I ate lots of gluten before - pasta, bread (I used to make my own), pizza so it did not make sense to me. Our family had a talk about this last night and the decision was to be absolutely strict about it for the next two weeks and see if there is some improvement. I had another triple whammy last night and I know I had no gluten in the last three or four days.

I just started dealing with all this myself 2 months ago. I am 53 years old. I had immediate improvement but it seems like I can't go more than 5 days without having diarrhea return. Sometimes I can find the culprit, most times I can't. I believe there is tons of hidden gluten out there and just this weekend I have resolved to be really strict and consume only known gluten free foods (fruits, veggies, etc,aka whole foods) or "certified" gluten free foods (aka primo expensive) :)

I got sick last week; I ate "new", but labeled good foods were Orville Redenbacher's Smart Pop microwave popcorn, Healthy Choice Cafe Steamer, Roasted Beef Merlot and MAYBE the Amy's Whole Meal, Santa Fe Enchilada. I ate these things over a 7 day period and after day 5 I started with the diarrhea for 3 days and have just now gotten better.

Share this post


Link to post
Share on other sites

Just wanted to add that you should have your own dedicated toaster and your own jars of mayonnaise, jam, and peanut butter as well as your own cubes of butter--contamination is very common in a household where others don't follow a gluten-free diet. Since you become ill from very small amounts of gluten, you should have your own shelf in the fridge for YOUR items.

Share this post


Link to post
Share on other sites

I posted before under the topic "wrong test for celiac?" I have had diarrhea daily for about eight months. On December 30th I started a gluten-free diet - my idea, I did not consult a doctor. There was some improvement after two weeks, real improvement after two months which lasted for a month. Then it got worse again and I saw the doctor on April 30th. He told me I am too old to have celiac disease. He did not order any tests for celiac and ordered a colonogram and referred me to the GI clinic. I did the bowel prep for the colonogram which was very difficult. I had 30 bowel movements in 24 hours and became severely dehydrated and collapsed unconscious on the floor the night before the test. They found a small polyp on the colonogram which he does not think could be causing such severe diarrhea. However he wants me to have a colonoscopy to have the polyp removed. I told him I don't think I could do that bowel prep again, not right now anyway. I am down to 108 pounds and am not feeling strong enough to go through that again so soon. I am also concerned about what will happen if I have the polyp removed and I continue with the diarrhea afterward and what effect that would have on the area where the polyp is removed - perhaps bleeding or something else. I still have not been seen by the GI clinic and I want to see them before a colonoscopy as I want to know what is causing the diarrhea. I think the polyp is a red herring and 50% of people my age probably would have a polyp found if they had a colonogram. I still think I have celiac, but the tests won't be valid because of being on a gluten-free diet for over six months. I am considering going off my gluten free diet to see what happens. I would really appreciate any opinions or advice. My doctor was supposed to call me three or four days ago but he has not so I am feeling like I have no one to help me.

I had my appointment with the GI clinic today. If I had not been warned by the people on this website, I would have been shocked. You would not believe what he said or maybe you would. He is a specialist in gastroenterology and he told me I am too old to have celiac disease. I am 69. He also said that watery bowel movements are not typical of celiac disease. I tried to tell him about the Finnish study but he was not interested. All he was interested in was doing a colonoscopy to remove the polyp which the resident told me may not even be there because it is only 1 cm. and could be a false positive. Then the GI told me that if I want to be tested for celiac, and I insisted on it, I have to go on gluten for two weeks. He would not listen to me when I told him it has to be two months or longer. He would only order the ttg IgA even though I asked him to also order the total IgA. He said that he thinks I have post-infective IBS.

He graduated in 1962 so he must be about 73 years old. It seems like all of these older doctors say the same thing and it is based on out-dated information. He also said my Vitamin D level is not low. It is 59 even though I have been taking 1000 units daily for a long time. I don't really want to go back on gluten, but I think I have to. I am wondering if I am just a nutcase and I am wrong in thinking that I got better on a gluten free diet. Now I am considering just eating all kinds of gluten and just see what happens. I would really appreciate any comments or advice.

Share this post


Link to post
Share on other sites

You are NOT a nutcase. Yes, you can try gluten and see what happens. A lot of us who self-diagnose eventually do that with mixed results. :lol:

Remember that you do not have to have a doctor's consent or any sort of positive celiac test to eat gluten-free. My doctor is a young osteopath and he's really good. He actually discouraged me from gluten challenge, because he says the tests aren't very good and that I already have a better answer from trying the diet. :wub:

Share this post


Link to post
Share on other sites

I had my appointment with the GI clinic today. If I had not been warned by the people on this website, I would have been shocked. You would not believe what he said or maybe you would. He is a specialist in gastroenterology and he told me I am too old to have celiac disease. I am 69. He also said that watery bowel movements are not typical of celiac disease. I tried to tell him about the Finnish study but he was not interested. All he was interested in was doing a colonoscopy to remove the polyp which the resident told me may not even be there because it is only 1 cm. and could be a false positive. Then the GI told me that if I want to be tested for celiac, and I insisted on it, I have to go on gluten for two weeks. He would not listen to me when I told him it has to be two months or longer. He would only order the ttg IgA even though I asked him to also order the total IgA. He said that he thinks I have post-infective IBS.

He graduated in 1962 so he must be about 73 years old. It seems like all of these older doctors say the same thing and it is based on out-dated information. He also said my Vitamin D level is not low. It is 59 even though I have been taking 1000 units daily for a long time. I don't really want to go back on gluten, but I think I have to. I am wondering if I am just a nutcase and I am wrong in thinking that I got better on a gluten free diet. Now I am considering just eating all kinds of gluten and just see what happens. I would really appreciate any comments or advice.

You can't think yourself out of gluten symptoms. If you are reacting positively to the diet then you have done the right thing. If you feel the need to challenge go with something like cream of wheat or triscuts. You don't want any confusion which can happen when folks challenge with stuff like pizza etc. I would suggest eating a bowl of cream of wheat or a handful of triscuits 3 times a day. You may not react for the first day or two as sometimes the antibody reaction is a delayed one. One other thing you can do which would not require a challenge is to go with Enterolab testing. They don't diagnose but they can tell you if you are making antibodies to gluten. You body doesn't make antibodies to something it wants. Your doctor was very misinformed. People can develop celiac at any age. I find it interesting he only wants to do the lower scope, if you do decide to have one done you may want to find a doctor who will do both ends at once. And yes you do need at least two months on gluten but I have a feeling if you decide to do the challenge that idea will not be one you will want to do.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

You can't think yourself out of gluten symptoms. If you are reacting positively to the diet then you have done the right thing. If you feel the need to challenge go with something like cream of wheat or triscuts. You don't want any confusion which can happen when folks challenge with stuff like pizza etc. I would suggest eating a bowl of cream of wheat or a handful of triscuits 3 times a day. You may not react for the first day or two as sometimes the antibody reaction is a delayed one. One other thing you can do which would not require a challenge is to go with Enterolab testing. They don't diagnose but they can tell you if you are making antibodies to gluten. You body doesn't make antibodies to something it wants. Your doctor was very misinformed. People can develop celiac at any age. I find it interesting he only wants to do the lower scope, if you do decide to have one done you may want to find a doctor who will do both ends at once. And yes you do need at least two months on gluten but I have a feeling if you decide to do the challenge that idea will not be one you will want to do.

I am just totally confused right now. It seems like these doctors do not even believe there is such a thing as gluten intolerance/celiac disease. They treated me like I was a nutcase who should not have the nerve to try and diagnose herself.

Share this post


Link to post
Share on other sites

Why do you need a diagnosis? If it comes out positive, all they can do is say "stop eating gluten", which is what you're doing anyway. Let the doc do the colonoscopy to help rule out anything serious, like Crohns, diverculitis, coloncancer etc. and just stick to the gluten-free diet. Could also be a parasite of some sort, maybe get a fecal culture test done? I would also recommend trying the Enterolab gluten panel with a gene test, if the results are positive it could convince your dinosaur doc.

Also, I would recommend you leave out all dairy products for a few weeks. I get reactions from lactose-free cheese and yogurt. A good tip is to do an elimination diet for 3-5 weeks or so, then start to reintroduce foods one by one and see what kind of reactions you get. After my first month of being gluten-free, I did a gluten challenge and had a much stronger visible reaction than before. I still don't have a firm diagnosis, but I know I feel better without gluten and dairy, that I don't seem to have anything else that could be serious and that's all I need to know.


Self-diagnosed gluten and dairy intolerance.

2005 - Brain fog, mild fatigue, chronic dry lips/skin, motility issues with alternating D, trouble gaining weight, canker sores, muscle twitching (mostly small muscles)

2008 - Occasional pale stools, along with previous symptoms

2009 - Unintended weight loss, acid reflux, gas and bloating, anxiety, mild depression, jaundice, finally saw my GP and a GI specialist. Dx'd with Gilbert's Syndrome, suspected Celiac by GI.

2010 - Muscle weakness, itchy hands, dizziness and worsening previous symptoms, almost gluten-free by accident, felt much better. Totally gluten-free for a month, felt almost normal, followed by g-challenge and symptoms returned.

Share this post


Link to post
Share on other sites

I am just totally confused right now. It seems like these doctors do not even believe there is such a thing as gluten intolerance/celiac disease. They treated me like I was a nutcase who should not have the nerve to try and diagnose herself.

So sorry you had a bad experience with the doctors. :(

I agree with the others - you don't need a doctor's diagnosis, go gluten free and start healing your body.

My GI specialist basically labeled me with glee - IBS - before the biopsy results had even come through. Now going to see my normal doctor and insisting on a proper celiac blood panel test.

I very much feel like it's all a money-making racket - IBS gives them repeat customers, whereas celiac has a sure free "treatment", and on a proper diet probably won't get him any repeat business.


Feb 2010 - Start of continuous GIT problems and panic attacks

July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms

July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem

*************************************************************

Gluten intolerant

Share this post


Link to post
Share on other sites

I very much feel like it's all a money-making racket - IBS gives them repeat customers, whereas celiac has a sure free "treatment", and on a proper diet probably won't get him any repeat business.

Yea I have to agree with this although I am reluctant to say they are doing it for just money reasons. I think it is more ignorance. But that said they did make literally thousands off me and my insurance company, about 17 grand in copays for testing and specialist visits from my family the year before diagnosis. I have now been gluten free for 8 years and haven't even had a cold since I was diagnosed. I do get a regular checkup every 2 or 3 years but other than that I haven't seen a doctor except for one real bad glutening when I went for help. Didn't get any though.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

Oh you poor thing. I really feel for you. I'm so sorry you feel alone. I hope this forum is helping you find solace and good advice. In this case, you should do what your body is telling you, not what the doctor is telling you.

If you haven't already, check out the book "The UltraMind Solution" by Mark Hyman. There is a good explanation of how to do an "elimination diet," which helps you remove certain possible food toxins from your diet over a period of several weeks, to help you to determine the culprit.

Best of luck to you, and courage! Wendy

Share this post


Link to post
Share on other sites

Thanks everyone for the help and advice. I thought about it overnight and decided to ask my GP to order a ttgIgA and a total IgA now and not wait until doing gluten again for two weeks. It should be negative, but if it is even slightly positive that means I have celiac disease. If it is negative then I will decide whether or not to do gluten and do the test again later.

My next question is how much gluten and for how long do I have to do gluten to satisfy myself that gluten is the problem? I don't mean for the test. I mean just to see if I get the horrible diarrhea back. If it did come back to the way it was before, I think I would be more sure that gluten is the problem. My experience at the clinic was so demoralizing that I now doubt myself and I feel I have to eat gluten again to make sure that is a problem. I could be wrong and just trying to convince myself that I know more than the doctors.

Share this post


Link to post
Share on other sites

On December 30th I started a gluten-free diet - my idea, I did not consult a doctor. There was some improvement after two weeks, real improvement after two months which lasted for a month. Then it got worse again

It sounds like you have not been strictly gluten free (soy sauce and beef broth). Since you had initial improvement, then declined again, I would guess it is because you are getting trace amounts of gluten.

My next question is how much gluten and for how long do I have to do gluten to satisfy myself that gluten is the problem? I don't mean for the test.

You felt well for two months off gluten. Eating small amounts of gluten made you feel worse. I'm not sure what else would satisfy you.....?


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

Share this post


Link to post
Share on other sites

You felt well for two months off gluten. Eating small amounts of gluten made you feel worse. I'm not sure what else would satisfy you.....?

I was eating those small amounts of gluten in the two months that I felt better because I did not think that a little bit of soy sauce or beef broth could cause problems. Now I am not sure what caused my diarrhea to come back. The GI said this is typical of post-infective IBS.

Share this post


Link to post
Share on other sites

You can't think yourself out of gluten symptoms. If you are reacting positively to the diet then you have done the right thing. If you feel the need to challenge go with something like cream of wheat or triscuts. You don't want any confusion which can happen when folks challenge with stuff like pizza etc. I would suggest eating a bowl of cream of wheat or a handful of triscuits 3 times a day. You may not react for the first day or two as sometimes the antibody reaction is a delayed one. One other thing you can do which would not require a challenge is to go with Enterolab testing. They don't diagnose but they can tell you if you are making antibodies to gluten. You body doesn't make antibodies to something it wants. Your doctor was very misinformed. People can develop celiac at any age. I find it interesting he only wants to do the lower scope, if you do decide to have one done you may want to find a doctor who will do both ends at once. And yes you do need at least two months on gluten but I have a feeling if you decide to do the challenge that idea will not be one you will want to do.

So the challenge is different from going back to my old way of eating. I loved pasta, pizza, and whole wheat bread. Do I do the challenge for just long enough to bring back the horrible diarrhea?

Share this post


Link to post
Share on other sites