Celiacs Or Not?

[ShortyAnne]

Four years ago I started experiencing stomach, bowel, and skin condition issues.

It started with a rash that spread from my lower trunk to my upper trunk, upper arms and face and back. I have always had odd rashes undiagnosed but this one lasted for 2months and was mostly undiagnosed as everything came up negative on testing from the doctor. One dr. did tell me I have dermotagraphism, raised welts caused by any type of pressure or scraping on skin. She wrote my name on my back and showed me.

I also experienced pain and bloating of my belly to the point that I begged to be put in the hospital until they figured out what was wrong with me only to be met with laughter, yep laughter. I saw several doctors for all of my symptoms which included weight loss, fatigue, mental fog, pain in joints and bones, loss of appetite, nausea, tingling in lips tongue finger tips and toes, gas upon eating, etc.

I was placed on 14 different medications which I finally went off of due to the drs just treating symptoms and not getting to the root of issue. My dr finally sent me to a surgeon to have a hiatal hernia surgically fixed only for me to find out that I do not have one. The surgeon sent me to a different hospital for 3 days worth of tests. All tubes down my throat and into stomach to check on acid reflux and to a gastro dr to see what else was going on. The gastro dr told me that I have lactose intolerance and IBS. I went back to the surgeon who had my final tests and told me that I do not have any acid reflux but that she consulted with a team of dr's and her colleague who is a naturopath as well as surgeon, he felt that I was hitting almost all markers for Celiacs as well as the surgeon having tests results from an endoscopy that I have 2 yrs previous that she felt showed Celiacs although I was not diagnosed by that dr as having. She strongly urged me to seek out my family physician and urge her to test me for celiacs. The surgeon also set me up with a nutritionist to learn more about Celiacs.

I went to my dr. and she declined to do the test and told me to go off of gluten for a while and see how I felt. Needless to say I felt better and alot of the symptoms went away.

I went back to her and I asked her why she didnt test me to see if that was really the issue. She never quite gave me an answer and just told me to stay off gluten and that would be that.

I kind of feel like she avoided being wrong, as at one point in the 4 years she suggested that I see a psyciatrist as she felt it was all in my head.

I am living a gluten free life style, go to a nutritional therapist, and feel so much better, but am unsure if I should seek out another dr to get tested for celiacs? Thoughts from anyone who has been here.

[nvsmom]

I am in the process of being tested, and very new to this myself so I'm not nearly as knowledgable as many here, but it sounds like celiac and your doctors couldn't get it together enough to actually say that. From what I know, it's really tough to get a clear diagnosis of celiac; I've only seen a few cases like that on the forum. Most people seem to experience wishy washy doctors who don't seem to want to say "celiac" if they don't get a positive on every test.

Anyways, if you do want to pursue further testing, you'll need to go on a fairly gluten heavy diet for a good four weeks, I've heard as long as 4 months, otherwise your tests will be low or normal... which is what you want in the long run but not for diagnosing. You'll have to decide if more tests are worth the glutening.

Check over on the pre-diagnosis board for more info. These people know a lot.

Nicole S

[Noche]

I wouldn't worry too much about the diagnosis if the diet is working.

I actually tested negative under North American standards and yet poitive under European standards.

The difference is that I feel fantastic in comparison since on the diet.

Hope this helps

Four years ago I started experiencing stomach, bowel, and skin condition issues.

It started with a rash that spread from my lower trunk to my upper trunk, upper arms and face and back. I have always had odd rashes undiagnosed but this one lasted for 2months and was mostly undiagnosed as everything came up negative on testing from the doctor. One dr. did tell me I have dermotagraphism, raised welts caused by any type of pressure or scraping on skin. She wrote my name on my back and showed me.

I also experienced pain and bloating of my belly to the point that I begged to be put in the hospital until they figured out what was wrong with me only to be met with laughter, yep laughter. I saw several doctors for all of my symptoms which included weight loss, fatigue, mental fog, pain in joints and bones, loss of appetite, nausea, tingling in lips tongue finger tips and toes, gas upon eating, etc.

I was placed on 14 different medications which I finally went off of due to the drs just treating symptoms and not getting to the root of issue. My dr finally sent me to a surgeon to have a hiatal hernia surgically fixed only for me to find out that I do not have one. The surgeon sent me to a different hospital for 3 days worth of tests. All tubes down my throat and into stomach to check on acid reflux and to a gastro dr to see what else was going on. The gastro dr told me that I have lactose intolerance and IBS. I went back to the surgeon who had my final tests and told me that I do not have any acid reflux but that she consulted with a team of dr's and her colleague who is a naturopath as well as surgeon, he felt that I was hitting almost all markers for Celiacs as well as the surgeon having tests results from an endoscopy that I have 2 yrs previous that she felt showed Celiacs although I was not diagnosed by that dr as having. She strongly urged me to seek out my family physician and urge her to test me for celiacs. The surgeon also set me up with a nutritionist to learn more about Celiacs.

I went to my dr. and she declined to do the test and told me to go off of gluten for a while and see how I felt. Needless to say I felt better and alot of the symptoms went away.

I went back to her and I asked her why she didnt test me to see if that was really the issue. She never quite gave me an answer and just told me to stay off gluten and that would be that.

I kind of feel like she avoided being wrong, as at one point in the 4 years she suggested that I see a psyciatrist as she felt it was all in my head.

I am living a gluten free life style, go to a nutritional therapist, and feel so much better, but am unsure if I should seek out another dr to get tested for celiacs? Thoughts from anyone who has been here.

[BunBun]

I don't know what my diagnosis is, but I accidently ran across a site advertising a book, "Wheat Belly, Lose the Wheat, Lose the Weight. I needed relief from the pressure on my belly above the belly button area. Desperate for relief, I ordered the book but began the no-wheat diet immediately. You may know that all wheat contains gluten, but gluten can be found in other grains e.g. barley, rye for example. In 19 days, I have lost 10+ pounds and 1.5 inches from my waist which gave me relief. In the meantime, I contacted a GI doctor and he ordered a CT scan which revealed nodular cirrosis (more advanced) of the liver and an enlarged spleen. My internist whom I see every year was shocked and said, "From what?" I think she did miss my diagnosis as I have had repeated high CRT levels and AST elevation (slightly) since at least 2009 indicated a "fattly liver". We thought "healthy diet" and exercise would take care of it. I go to a gym 7 days a week. She knows I drink minimaly at best. Oddly enough my undiagnosed allery to something related to food which caused me to sneeze up to 8-9 times in a row has ceased since the start of the no-wheat diet. I may or may not have a gluten allery, but the diagnosis calls for an endoscopic exam which I don't know if they will follow up on this. Nice to have found this site and I will be reading a lot of the posts.

[beachbirdie]

I don't know what my diagnosis is, but I accidently ran across a site advertising a book, "Wheat Belly, Lose the Wheat, Lose the Weight. I needed relief from the pressure on my belly above the belly button area. Desperate for relief, I ordered the book but began the no-wheat diet immediately. You may know that all wheat contains gluten, but gluten can be found in other grains e.g. barley, rye for example. In 19 days, I have lost 10+ pounds and 1.5 inches from my waist which gave me relief. In the meantime, I contacted a GI doctor and he ordered a CT scan which revealed nodular cirrosis (more advanced) of the liver and an enlarged spleen. My internist whom I see every year was shocked and said, "From what?" I think she did miss my diagnosis as I have had repeated high CRT levels and AST elevation (slightly) since at least 2009 indicated a "fattly liver". We thought "healthy diet" and exercise would take care of it. I go to a gym 7 days a week. She knows I drink minimaly at best. Oddly enough my undiagnosed allery to something related to food which caused me to sneeze up to 8-9 times in a row has ceased since the start of the no-wheat diet. I may or may not have a gluten allery, but the diagnosis calls for an endoscopic exam which I don't know if they will follow up on this. Nice to have found this site and I will be reading a lot of the posts.

Fatty liver is a definite companion to celiac disease. Keep tabs of your liver enzymes. I'll bet you see them dropping if you continue gluten-free. There is research out there to support...you can search at pubmed, here's one article for you... "Open Original Shared Link".

[beachbirdie]

I am living a gluten free life style, go to a nutritional therapist, and feel so much better, but am unsure if I should seek out another dr to get tested for celiacs? Thoughts from anyone who has been here.

If you are well, why rock the boat? There are lots of reasons to pursue a diagnosis, and lots of reasons not to, it's kind of a personal choice.

But you have to ask yourself if it's really worth it to make your sick for months in order to get a doctor's seal of approval.

The goal is good health. Do you feel like you have that?