Newly gluten-free

[Lollie]

Hi my name is Laura and I just registered to this site. I've been reading since about the new year but I just now felt like I wanted to start writting.

From reading past entry's, I know that having the history of my illness is helpful, so here goes:

I was diagnosed with ulcers, gastritus, burning of the esophagus, and IBS 10 years ago, since then I have never fully recovered. I have taken every acid reducer on the market and I frequently have to take a muscle relaxer for cramps. I am 32 years old, so this all started when I was only 22. Since everyone in my family has ulcers, we all figured it was just the way it is. I continued to suffer....boughts of anarexia, feeling like I was a crazy person, always afraid to eat anything (since even the bland diet made me sick), and never wanting to eat if something important was coming up or we were traveling since every thing just goes straight through.

Luckily I have a wonderful husband who always tried to help me. And, who truly felt horrible and worried for me constantly. He was lucky enough to read an article one day that breifly mentioned celiac. He researched it himself and then told me about it. By this time I know longer had any hope, but thank God he did. He realized I had a majority of the symptoms mentioned and also the fact it is so often misdiagnosed for the things I have.

So....I went to see my doc at the first of the year. She felt unqualified to make a diagnoses. I went to see a specialist. He promised me that he would "diffinitively" find out what was wrong with me. (including celiac) I had upper and lower GI's and every blood test known to man. He sent me a letter a bout a week ago saying that they had found nothing but polyp's (which he said were caused by the med's) but for me to continue taking the previously mentioned med's indefinantly. He had mentioned that perhaps I didn't deal with stress well, and that my muscles tightened greatly during the testing,hence the muscle relaxer.

At that point I decided to try the glutten free diet-luckily we have great super markets in our area who specialize in whole/organic foods and were very knowledgable. It has been a week, just one week, but I have seen marked improvement. I have had normal bowel movements since the second day, I haven't been taking any of my meds for about 3 weeks and have not had the acid or the reflux or the nausea, and my energy level seems alot better.

So I guess, my quetion is, Even if you have gone through evasive testing can it be possible to have celiac that just was not yet detected? Has anyone else had similar experiences? It would truly help to know, because I could see how it could be difficult to stay gluten-free with out the actual diagnosis. Could I just have a gluten intolerence? Am I really just crazy?

Thanks so much for any advice or comments.

Lollie

[Rachel--24]

Hi Lollie,

Welcome to the board.

You will find lots of the people here have similar stories to tell. You may be gluten intolerant and not celiac but either way the diet is the only treatment. Since you've already started the diet and are noticing improvement I'd say you have your answer. You should find out exactly what tests were run for celiac disease. Sometimes the doctors dont run all the tests. If you feel you need more testing in order to stick with the diet you can always do stool/gene testing through Enterolab.

[christa]

Hi Lollie,

Welcome to the board.

You will find lots of the people here have similar stories to tell. You may be gluten intolerant and not celiac but either way the diet is the only treatment. Since you've already started the diet and are noticing improvement I'd say you have your answer. You should find out exactly what tests were run for celiac disease. Sometimes the doctors dont run all the tests. If you feel you need more testing in order to stick with the diet you can always do stool/gene testing through Enterolab.

I had the same thing happen to me. I had blood work and biopsy etc. and it all came back negative. I did get tested through entrolab and I have the main celiac gene and gluten and lactose intolerance. I have been totally gluten free for just under 2 months and I fell soooo much better. I just went to see a gastroenterologist today and he made me feel horrible, like I was a little crazy. My family doctor told me I shouldn't have wasted my money on entrolab test. However this is the best I have felt in 3 and a half years so regardless of what they say I will continue to be gluten free and hope that things keep improving. If you find it is helping you then stick with it. I found gluten free bagels and cookies , waffles etc which made the diet so much easier to stay on and not crave all those things we shouldn't have. Hang in there, keep on the diet and if you just keep improving I would say that you have your answer. That is my conclusion for myself anyway.

Christa

[watkinson]

Hi Lollie,

Welcome!

Many of the people on this board have experienced the same thing.

I was always sick as a child, started getting what I call attackes (Severe stomach pain, with liquid diareah and vomitting) in my teens. Crippling joint pains in my early 20's along with eczema and rashes on my face, neck, and shoulders. As the years went on the joint pain worsened and I started to have severe bone pain and peripheral nueropothy (tinging and numbness in my hand and feet with shooting pains going up and down my arms and legs). Fibromyalgia, Hypothyroidism and weight gain (probably also due to the fact that I lived on anti diareahal, 2 to 4 a day, every day)

I saw many doctors over about 20 years and never got an answer. It was always "I don't know" why you have joint pain or PN or stomach problems or anything else I suffered from. I was diagnosed with IBS and made to feel like I was nuts. I was tested for Rheumatoid arthritis, for Lupus, Chrones, Colon Cancer, MS, you name it. Finally, I fugured out myself that I had celiacs disease and went to an Endocrinologist for the tests. I am happy to report that I have gluten-free for almost 2 years. Ths stomach problems were cured instantly (like the first day) no more attacks, no more stomach pain, no more Diareah!! Every other problem has gone away or is continuing to get better.

The problem is that there is nothing in it for doctors to help us with Celiac disease. All we have to do is give up gluten and we are"cured" The drug companies get nothing out of it because we don't have to take a drug. And doctors get nothing out of it because we aren't sick anymore so we don't have to keep seeing them. The testing in this country is not good. Too many flase positives. Too many doctors doing the woring tests, ect.

If you have gone gluten-free and feel better then that is all you need to know. If you really want a medical diagnosis go to an endocrinogogist and get the correct tests.

IgA, IgG antigliadin antibodies and IgA antiendomysial antibodies

I'm glad you feel better. Once you go gluten-free, it is miraculous and wonderful how quickly you feel better isn't it? Although in a way very sad...years and years of pain and suffering and all one of these doctors had to do was suggest a food intollerance. oh well... Wendy

[Guest cassidy]

I have a similar situation. My mother has dh - the skin reaction to gluten - and started researching it. She found out that many of my symptoms could be attributed to this. I took the blood test and went on the diet the same day. The blood test came back negative but I feel sooooo much better. I will never go back on gluten no matter what the test says.

I am having surgery for reflux next week - I was hoping it would get better with this diet but no luck. I am having an endoscopy on Thursday so I asked them to do a biopsy while they were down there. I'm sure it will be negative, but it doesn't matter.

Glad you are doing better. I wouldn't doubt your body's positive reaction to the gluten-free diet. If you didn't have a problem with gluten then you wouldn't feel different on the diet.

People kept saying it gets easier to follow the diet, but I wasn't sure. I haven't glutened myself in 9 days!

[CMCM]

From the reading I've done, there are apparently celiac specialists who would like to see the world "celiac disease" eliminated, and simply call the whole thing "gluten sensitivity." These researchers feel gluten sensitivity is a spectrum of reactivity, with what is currently called "celiac disease" merely being a more extreme point on the spectrum, with clearly defined intestinal damage and malabsorption occurring. My understanding is also that any gluten sensitivity, no matter how mild (and some of it is entirely without any symptoms at all), has the potential to progress to a more serious form of gluten sensitivity and subsequent intestinal damage....possibly occurring over time because the person keeps eating gluten, or possibly occurring suddenly because it is triggered by some physical or psychological event.

Dr. Fine at Enterolab recommends that once you have a diagnosis of gluten sensitivity OR celiac (thru the gene analysis) you simply should no longer eat gluten. The same applies to casein as well.

[watkinson]

Sorry,

I posted here yesterday (2 posts up) and accidentally said "too many false positives" Of course I meant to say too many false negatives. In other words our testing isn't good and people go away being told thier tests were negative for celiacs when they really do have the disease. They go home, continue in their life style and continue to be sick.

Sorry for the mistake, Wendy