Help Me Understand Celiac Disease!

[Thizz09]

So I think I have celiac disease. Over the past year I've had 3-4 severe bouts of a sickness. Twice leading me to the hospital. I had an endoscopy (along with ct, blood, and a bunch of other tests) last year that found nothing wrong with me. Recently I've been really sick and had an endoscopy. I see my doctor on wednesday to talk about the results. On his findings report thought, he wrote 'small notches in small intestines'. I did some google research to find that this may potentially mean celiac disease. At first I thought this might have been cannabinoid hyperemesis, but I've been drug free for two weeks and althought I'm able to eat again, I still get slight stomach pain when I eat, bloating, lots of gas, ect. I also have dematographia. I once read on a forum that some people with celiac disease have this. Like I said I throughout the past year I've gotten 3 or 4 severe bouts of sickness that last for weeks, but the times I wasn't sick I still had lots of gas, bloating, nausea, tiredness things like that. Do people with celiac that choose to eat gluten suffer like this? Do they have these symptoms that climax with cyclical vomiting and stomach pains for days at a time? Today is day one of my gluten free diet to see if I really have celiac disease. I've been reading lots of posts and it sounds like not everybody experiences the same symptoms. It also looks like going gluten-free doesn't guarantee a relief of symptoms (or maybe it does but it can require a very long time and a truly gluten free life [cross-contamination, ect]). I also wanted to know if its possible to be able to eat small amounts of gluten if your a celiac. Meaning, can you lead a 90% gluten free life, but cheat every now and then and not suffer your symptoms. Pretty much tell me about your experiences so I can get a better feel of celiacs disease.

[ravenwoodglass]

No you can not cheat on the gluten free diet as it will keep the autoimmune attack going. I had good and bad days for years before life became one constant sickness. Since you have gotten the biopsy you can go ahead and start on a trial of the diet. It is a good idea to also delete or restrict dairy at first. Go with as much of a whole food unprocessed diet as you can. Most of us see improvement fairly quickly but it can take a while to heal.

[Skylark]

If you suspect that you are truly celiac and not gluten intolerant, you cannot do the diet at 90%. You risk other autoimmune health problems and continued malabsorption. You will also probably find that over time as your immune system settles down from not being under constant gluten assault, you will react more strongly to gluten. 90% is not an option for most of us if we want to stay feeling good.

[Thizz09]

Endoscopy and blood-work both are normal and don't point to celiac disease. I'm being put on a low dose of desipramine which should help according to my doctor. So it's been 4 days and I'm officially going off my gluten-free diet and seeing if these new pills work. I have to say, being gluten-free is really hard. A lot of things you think would be safe end up not being so safe. For example, I was at school and bought a bag of some rice cracker/chip things from the vending machine. Turned it around and read the ingredients and read maltodextrin. Damn. Had to buy something else. Came home and saw some pork. Read the ingredients. Said it was rolled in a bunch of ingredients, one of which was wheat? Hopefully these pills work for me because following the gluten-free diet takes a lot of work! I have a lot of respect for you guys who are able to stict to this.

[ravenwoodglass]

Endoscopy and blood-work both are normal and don't point to celiac disease. I'm being put on a low dose of desipramine which should help according to my doctor. So it's been 4 days and I'm officially going off my gluten-free diet and seeing if these new pills work. I have to say, being gluten-free is really hard. A lot of things you think would be safe end up not being so safe. For example, I was at school and bought a bag of some rice cracker/chip things from the vending machine. Turned it around and read the ingredients and read maltodextrin. Damn. Had to buy something else. Came home and saw some pork. Read the ingredients. Said it was rolled in a bunch of ingredients, one of which was wheat? Hopefully these pills work for me because following the gluten-free diet takes a lot of work! I have a lot of respect for you guys who are able to stict to this.

The drug your doctor gave you is an antidepressant. I am giving you a link so you can learn about it and the side effects. Do not drink alcohol or take any other depressant drugs while you are taking this. Be sure to check out the side effects of this drug so you can be aware if they occur and contact your doctor immediately. Many of us are given antidepressants when doctors can't figure out what is going on along with an IBS label.

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Do be aware that false negatives are unfortuanately common. Just because those tests were negative doesn't always mean that gluten isn't an issue. 4 days is not enough time to do a dietary trial. Maltodextrin by the way is safe, it is corn derived not gluten. The best way to do a trial is by eating whole unprocessed foods that are naturally gluten free. Stuff like steak and potatoes, rice, veggies, fruit, nuts, beans and eggs. It sounds like you are young and perhaps in college? It is hard when in school to do the diet but you may want to check with your cafeteria as they may do gluten free items. If you get worse, which you very well may if you really need to be on the diet do not hesitate to give it another try or to be retested and then try again. The diet is not hard once you get used to it.

[Thizz09]

When he mentioned he wanted to give me an anti-depresent I might've given him a weird look because right away he said that he doesn't think I've got any mental problems but it's one way about going about treating me. It was either this or getting a colonoscopy to check for Chrons disease, which he doesnt think I have, and which I don't want to have to go through if he doesn't think I have that. And I am aware that false negatives are common, I've read about 4 dozen threads about self-diagnosed celiacs, but I don't see how if he didn't see damage in my intestine how I could have this, if thats ultimately what this disease is. It's also a lot of wishful thinking on my part, because I don't know how I'd manage if I truly have this disease. I am in college and eat the cafeteria food, which would make it really hard (but not impossible) to follow this diet. And I think I got the maltodextrin thing mixed up then, because I thought I read that in the U.S. it's wheat based and Europe it's not, but I guess I got that mixed up if that's how it goes. I'm going to give these pills a try in the mean time and if they don't do anything for me I think my last choice is to really follow this diet. Like I said it's mostly wishful thinking in hoping I don't have this, so I want to try other options before having to give up gluten, because we live in a gluten-filled world, and its going to be hard for me, especially at my age, to follow this diet. Thanks for letting me know about the alcohol too. My doctor didnt mention that, and I overlooked that when I did some research on the drug. Being a college student thats going to be hard when those situations arise, but my doctors goal is for me to take this for a while so I can feel better and then eventually wheen me off. So I hope whatever he's thinking works, but if not, I guess my last choice is to see if a gluten-free diet works for me. Im crossing my fingers. I'm giving these pills a few weeks.

[Skylark]

He's not giving you the desipramine as an antidepressant. He's giving it because desipramine is good for low-level chronic pain. My doctor put me on it for myofacial pain I had at one point and I have a relative on it for migraines.

The desipramine is only treating symptoms; in other words it's basically a band-aid. It will not fix any underlying problems like gluten intolerance or fructose malabsorption.

[ravenwoodglass]

He's not giving you the desipramine as an antidepressant. He's giving it because desipramine is good for low-level chronic pain. My doctor put me on it for myofacial pain I had at one point and I have a relative on it for migraines.

The desipramine is only treating symptoms; in other words it's basically a band-aid. It will not fix any underlying problems like gluten intolerance or fructose malabsorption.

Yes it is similiar to amytriplimine which I was given also. For me it did absolutely nothing but add to my drug regime. It may help the OP a bit but if the underlying problem is an intolerance it won't do anything for the gut symptoms. As you said it will not fix the underlying problems.

[ravenwoodglass]

When he mentioned he wanted to give me an anti-depresent I might've given him a weird look because right away he said that he doesn't think I've got any mental problems but it's one way about going about treating me. It was either this or getting a colonoscopy to check for Chrons disease, which he doesnt think I have, and which I don't want to have to go through if he doesn't think I have that. And I am aware that false negatives are common, I've read about 4 dozen threads about self-diagnosed celiacs, but I don't see how if he didn't see damage in my intestine how I could have this, if thats ultimately what this disease is. It's also a lot of wishful thinking on my part, because I don't know how I'd manage if I truly have this disease. I am in college and eat the cafeteria food, which would make it really hard (but not impossible) to follow this diet. And I think I got the maltodextrin thing mixed up then, because I thought I read that in the U.S. it's wheat based and Europe it's not, but I guess I got that mixed up if that's how it goes. I'm going to give these pills a try in the mean time and if they don't do anything for me I think my last choice is to really follow this diet. Like I said it's mostly wishful thinking in hoping I don't have this, so I want to try other options before having to give up gluten, because we live in a gluten-filled world, and its going to be hard for me, especially at my age, to follow this diet. Thanks for letting me know about the alcohol too. My doctor didnt mention that, and I overlooked that when I did some research on the drug. Being a college student thats going to be hard when those situations arise, but my doctors goal is for me to take this for a while so I can feel better and then eventually wheen me off. So I hope whatever he's thinking works, but if not, I guess my last choice is to see if a gluten-free diet works for me. Im crossing my fingers. I'm giving these pills a few weeks.

I do hope it helps you. I also wanted you to be aware of it's side effects since many times doctors don't mention them. I wouldn't wish celiac on anyone but if we have it it's important to know as soon as possible to prevent some serious and sometimes irreversable damage. The diet is tough to follow in school. If the med doesn't help do talk to the cafe folks as celiac is being diagnosed a lot more often and some schools are making gluten free food available.