I Have Chrohns And Was Never Told About Celiac

[mshell37]

For about 15 years I have had gastreointestinal problems. I had brought the syptoms to my primary care doctors attention, he just convinced me that every symptom I had was stress related and would go away as I reduced my stress level. As the years past the symptoms got worse and being a working single mom of three and a student my stress level could not be reduced by much, so when I would go to my doctor with a complaint he would tell me the same thing. Never offered any suggestions to diet change, tests from a GI doctor or anything. At one point I was getting dizzy spells and he told me that I had an inner ear infection without running any test, I believed him. The treatment was antivert, I took an antivert everyday or when I would feel dizzy, I went back to him 2 weeks later complaining that the dizzy spells werent getting any better, he told me that it was my anxieties (which I know I have problems with) so he told me to continue taking the antivert but asked me to try these non narcotic and non addicting anxiety pill (effexar??), this because no matter what he would tell me I would refuse to take any meds because I did not want to be on drugs because I was a single mom who had to be alert at all times. I agreed to take the effexar to try it out for the anxiety. After approx 2-3 weeks of taking it along with the antivert for the dizzy spells that were still happening and getting worse now, I ended up in the ER due to my entire arm going completely numb while I was driving. The hospital triage nurse did my vitals and called for the doctor right away with concern that I was having a heart attack due to my blood pressure being 198/96 this being very high considering I was only 27 yrs old at the time.To make a long story short I was not having a heart attack it was the med that was causing my BP to shoot so high and I did not have an inner ear infection at all due to this I just stopped going to my doctor for any reason. I lost all trust in my doctor and would only go to the ER if I absolutely needed to. Eventually I stopped taking the antivert also and dealt with the dizzy spells as the came on which did eventually become alot less frequent.

For the next 8 or 9 years I just dealt with the GI problems which consisted of constant back door runs, cramping, bloating, etc. I spent so much time in the bathroom that my kids got use to sitting next to the bathroom door to have conversation with me and this went on for years. This past year my kids and I took a trip to Florida and of course we had the usual frequent stops because of my problem but we have gotten use to it for the past several years. At this time it had been about 1 1/2 or 2yrs since my last dizzy spell. As we were driving home from Florida I noticed some severe abdominal cramping and just tried to ignore it as much as I could in hopes it would go away. Half way home I began to get very dizzy so dizzy that it was very noticeable to my son who was 15 at the time. I pulled over into a rest stop to try to shake it off, this was not working so my son offered to drive for awile and I let him. He was able to get us within an hour of our home in Pgh before I had to continue driving. At this point I felt pretty good and was able to get us home.

That week I made an appointment with my gyn doctor with thoughts that it may be the mirina insert that I had just got in recent mths for birth control. My gyn dr checked it for me and sent me for some other test in attempt to determine if there were any other problems relating to this topic of my body that could have caused this. When all results came back ok or at least not relating to this issue he referred me to a GI doctor due to the location of the cramping. The GI sent me for an CT scan first, then had me come back for a colonoscopy which as results came back I had some diferticulitis and a very small cyst on my ovary, but the problem was chrones and an infection in my small intestine. He sent me home totally doped up with no instructions for anything accept the antibiotics for the infection. I waited a few days and called his office in attempt to get some answers as to what I should do about it. He never returned any of my calls, I eventually had to start reading up on chrones to find out about what to eat and what not to eat, etc. I have been being as careful with my diet as possible, been going to a chiropractor for regular manipulations (which has really helped alot until I dropped it to every 6 weeks) and just started trying out aloe vera juice in hopes that will help with flare ups, it has a little but not much.

Tonight I went online to find some ideas for home remedies for anxiety because my anxieties have been a bit out of control in the past couple weeks. During this research I come accross information about ciliac, should I get tested for this? I notice the info said someone with chrones should automatically start the diet due to the likeliness of having ciliac. I am very cautious about going to any doctors now, I dont believe in the rule out system, which is what my primary doctor always did but at the same time I dont want to deal with the aggrivation of knowing but not having the support of my doctor after being diagnosed. Should I just start the diet and see if there is a significant change and just self diagnose or actually get tested?

[mushroom]

For about 15 years I have had gastreointestinal problems. I had brought the syptoms to my primary care doctors attention, he just convinced me that every symptom I had was stress related and would go away as I reduced my stress level. As the years past the symptoms got worse and being a working single mom of three and a student my stress level could not be reduced by much, so when I would go to my doctor with a complaint he would tell me the same thing. Never offered any suggestions to diet change, tests from a GI doctor or anything. At one point I was getting dizzy spells and he told me that I had an inner ear infection without running any test, I believed him. The treatment was antivert, I took an antivert everyday or when I would feel dizzy, I went back to him 2 weeks later complaining that the dizzy spells werent getting any better, he told me that it was my anxieties (which I know I have problems with) so he told me to continue taking the antivert but asked me to try these non narcotic and non addicting anxiety pill (effexar??), this because no matter what he would tell me I would refuse to take any meds because I did not want to be on drugs because I was a single mom who had to be alert at all times. I agreed to take the effexar to try it out for the anxiety. After approx 2-3 weeks of taking it along with the antivert for the dizzy spells that were still happening and getting worse now, I ended up in the ER due to my entire arm going completely numb while I was driving. The hospital triage nurse did my vitals and called for the doctor right away with concern that I was having a heart attack due to my blood pressure being 198/96 this being very high considering I was only 27 yrs old at the time.To make a long story short I was not having a heart attack it was the med that was causing my BP to shoot so high and I did not have an inner ear infection at all due to this I just stopped going to my doctor for any reason. I lost all trust in my doctor and would only go to the ER if I absolutely needed to. Eventually I stopped taking the antivert also and dealt with the dizzy spells as the came on which did eventually become alot less frequent.

For the next 8 or 9 years I just dealt with the GI problems which consisted of constant back door runs, cramping, bloating, etc. I spent so much time in the bathroom that my kids got use to sitting next to the bathroom door to have conversation with me and this went on for years. This past year my kids and I took a trip to Florida and of course we had the usual frequent stops because of my problem but we have gotten use to it for the past several years. At this time it had been about 1 1/2 or 2yrs since my last dizzy spell. As we were driving home from Florida I noticed some severe abdominal cramping and just tried to ignore it as much as I could in hopes it would go away. Half way home I began to get very dizzy so dizzy that it was very noticeable to my son who was 15 at the time. I pulled over into a rest stop to try to shake it off, this was not working so my son offered to drive for awile and I let him. He was able to get us within an hour of our home in Pgh before I had to continue driving. At this point I felt pretty good and was able to get us home.

That week I made an appointment with my gyn doctor with thoughts that it may be the mirina insert that I had just got in recent mths for birth control. My gyn dr checked it for me and sent me for some other test in attempt to determine if there were any other problems relating to this topic of my body that could have caused this. When all results came back ok or at least not relating to this issue he referred me to a GI doctor due to the location of the cramping. The GI sent me for an CT scan first, then had me come back for a colonoscopy which as results came back I had some diferticulitis and a very small cyst on my ovary, but the problem was chrones and an infection in my small intestine. He sent me home totally doped up with no instructions for anything accept the antibiotics for the infection. I waited a few days and called his office in attempt to get some answers as to what I should do about it. He never returned any of my calls, I eventually had to start reading up on chrones to find out about what to eat and what not to eat, etc. I have been being as careful with my diet as possible, been going to a chiropractor for regular manipulations (which has really helped alot until I dropped it to every 6 weeks) and just started trying out aloe vera juice in hopes that will help with flare ups, it has a little but not much.

Tonight I went online to find some ideas for home remedies for anxiety because my anxieties have been a bit out of control in the past couple weeks. During this research I come accross information about ciliac, should I get tested for this? I notice the info said someone with chrones should automatically start the diet due to the likeliness of having ciliac. I am very cautious about going to any doctors now, I dont believe in the rule out system, which is what my primary doctor always did but at the same time I dont want to deal with the aggrivation of knowing but not having the support of my doctor after being diagnosed. Should I just start the diet and see if there is a significant change and just self diagnose or actually get tested?

Hi, and welcome to the forum.

At this point there is really no way of knowing whether or not you have celiac disease or a gluten intolerance. Have you noticed any foods that seem to make your symptoms worse, for example? And with some people the reaction times after eating a food that is not tolerated are longer than with others, so that can even be harder to figure out. My personal recommendation at this point, since you are still actively eating gluten (I presume), would be to do the celiac testing. Once you have quit gluten it is too late to do the testing, especially if you find out that that relieves your symptoms, because then you will not want to resume eating it for the three months that is necessary for your body to rebuild the level of antibodies for a positive blood test, or redamage your small intestine for a positive biopsy test.

That being said, it is possible that you do not have celiac disease, and it is also possible that you do not even have gluten intolerance. If you test negative for celiac, the next test is to eliminate the gluten and see how it affects your GI symptoms. If they get better, it means you are gluten sensitive/intolerant, (or that gluten free is helping your Crohn's) or that the negative celiac test was a false negative (about 20% of them are

It would be interesting to know what your small intestine infection was, whether it was c. difficile or some such thing, which often occurs when your bacterial flora get out of whack and you get an overgrowth of the bad bacteria and limitation of the good guys, as often happens in celiac disease. A shame he did not do an upper endoscopy at the time he did the colonoscopy; however, most of them don't think of doing this - it's kind of tunnel vision.

Your chronic GI symptoms and your constant anxiety could well be caused by celiac disease. Most people with undiagnosed celiac who report anxiety to their doctors are given medication to treat the symptoms and just told that it is situational anxiety. Well, sometimes it is, but a lot of the time it isn't, it's a symptom of celiac disease.

So yes, I do think you should be tested.

On another note, people with Crohn's disease are usually also told to eliminate most gluten from their diet, and yet this apparently was not recommended to you??

[Heidi S.]

I was mis-diagnoised with Crohn's, after an intestinal infection, several months before going gluten free and now am diagnosed gluten intolerant not Crohns. May of us are skeptical of doctors because of poor treatment as well. Now that I am gluten free, I was able to stop all crohn's medicine (hated the steroids!) and acid reflux medicine! Medicine free and loving it!

You can go get tested or you can do what many of us do and try the diet. The testing technology although better has a lot of problems still. If you do want to be tested though, do not start a gluten free diet until after, you must be on gluten to get good results. The question we all face here is what testing do you want to go through to get a diagnosis. I chose to do genetic, allergy, and the diet and not put myself through more scopes.

It is a possibility that you are Celiac, gluten intolerant, or Crohns, but even with Crohn's a gluten free diet can help, as with autism and ADD! Good Luck!

[GFinDC]

The blood tests are a simple thing to get done. They take a few vials of blood and test them for various antibodies to gluten. A positive antibody test is pretty reliable but a negative is not so reliable. In other words, testing negative doesn't mean you don't have antibodies. Another option is Enterolab stool testing for antibodies. An endoscopy may be suggested by the docs to prove celiac also.

Doing the blood tests seems like a good idea if you need the diagnosis to motivate you to stay on the diet.

Some suggestions for if you do decide to do the diet. Avoid all processed foods to start out, for at least a few months. Cook all your own foods at home from whole ingredients. Eliminate all dairy and soy to start also.

Search for threads on vitamins. Usually liquid B-12 is recommended, along with D.

Doing the diet is a very good test all by itself. If you stick with it strictly for 3 or 4 months you will probably know your answer. There are also genetic tests which can show an increase chance of celiac but can't prove you have it. But they may be relevant for your children to know if they might carry the genes.

[Desiree49]

I also was misdiagnosed with Crohn's and now they think I have Celiac. I am just now starting to go gluten-free.

[Korwyn]

Many people here have similar stories of decades of mis-diagnosis. Ataxia (balance issues) are a known condition linked to untreated celiac disease. All of the other symptoms you mentioned could be secondary or tertiary conditions as well. At 20 years old I started having heart attack symptoms. Off and on for another 20 years. I too was told it was all stress. Anxiety, panic attacks, diarrhea, many other problems. Diagnosed with IBS, stress, etc. All turned out to be gluten, dairy, and soy related.