Newbie With Some Questions

[IMWalt]

Hi!

I'm new here, and not yet sure I even need to be here. Let me explain. After 1.5 years of constant diarhea, my daughter was diagnosed with celiac disease. She had a biopsy that was negative, but a positve blood test. Last year I decided to get tested. My blood test was negative, so I thought I was OK.

Since then my sister thinks she might have it, and her son's newborn daughter has been diagnosed with it, so it appears it is on my side of the family.

I have discovered that false negative blood tests are common, and the only real way to tell is to go gluten-free and see if your symptoms go away. My main symptoms are very bad abdominal cramps, gas, irritability, dry skin and trouble making decisions.

Five days ago I finally decided to give it a try. My main problem for years has been the horrible abdominal cramps and gas. I sit in an office and most days I am in agony from the cramps, and then I have horrible gas all night. On my first gluten-free day, I had no cramps at all and no gas. Pretty much the same results the next few days until yesterday. I travel a lot, and during a conference in Boston I ate some chicken that I thoguht was OK but then found out there was bread crums in the dish. I had some cramps and gas last night.

So I guess here's my questions.

Is it normal to find such quick relief from symptoms?

Should I consider having a day where I eat a lot of gluten and see if the symptoms are severe again, thus confirming a self-diagnosis?

I am a competitive marathon runner and eat very healthy anyway, so the diet changes don't scare me. I just want to be sure that gluten is my problem before I give up an accasional beer and pizza.

Thanks

Walt

[dbmamaz]

I'm not sure i'm celiac either (tho i rather suspect I am) and I had a negative blood test after being off of wheat for 6 weeks. My stomach symptoms cleared up within 5 days for sure, except a few other foods were still tripping me up. My headaches (which i didnt imagine were related) cleared up a few weeks later, and then my energy started increasing too.

So, not everyone has immediate relief, but many do. If you want to give yourself a gluten challenge (eat gluten again) thats certainly your decision - i've seen a few ppl post on here saying that after a gluten challenge, they felt sick for 2 more weeks. So just be warned.

But you have to admit it would be a pretty strong coincidence if the gluten wasnt responsible for your symptoms. And even if you arent celiac, if you're gluten intolerant, it doesnt really make any difference to you - dont eat gluten, feel better.

[Ursa Major]

Yes, you can have relief that fast. In 2005 I had chronic, horrible, watery D for six whole months, with cramping so bad that I went to the ER once, because I thought I had a heart attack (they sent me home after five hours, telling me I was fine, that I had 'only' severe bowel and stomach cramps).

When I figured it out and stopped eating gluten, the D completely stopped by the next day! The following day my backaches started going away (which had been crippling for months).

Now I only get severe bloating, cramps and D when I have been glutened.

I say, with your daughter having celiac disease, and your sister and her baby, too, and your amazing dietary response, you really have your answer.

[gfcookie]

Hi!

I'm new here, and not yet sure I even need to be here. Let me explain. After 1.5 years of constant diarhea, my daughter was diagnosed with celiac disease. She had a biopsy that was negative, but a positve blood test. Last year I decided to get tested. My blood test was negative, so I thought I was OK.

Since then my sister thinks she might have it, and her son's newborn daughter has been diagnosed with it, so it appears it is on my side of the family.

I have discovered that false negative blood tests are common, and the only real way to tell is to go gluten-free and see if your symptoms go away. My main symptoms are very bad abdominal cramps, gas, irritability, dry skin and trouble making decisions.

Five days ago I finally decided to give it a try. My main problem for years has been the horrible abdominal cramps and gas. I sit in an office and most days I am in agony from the cramps, and then I have horrible gas all night. On my first gluten-free day, I had no cramps at all and no gas. Pretty much the same results the next few days until yesterday. I travel a lot, and during a conference in Boston I ate some chicken that I thoguht was OK but then found out there was bread crums in the dish. I had some cramps and gas last night.

So I guess here's my questions.

Is it normal to find such quick relief from symptoms?

Should I consider having a day where I eat a lot of gluten and see if the symptoms are severe again, thus confirming a self-diagnosis?

I am a competitive marathon runner and eat very healthy anyway, so the diet changes don't scare me. I just want to be sure that gluten is my problem before I give up an accasional beer and pizza.

Thanks

Walt

the interesting thing about a gluten-free diet is that it is a LOT healthier than a diet w/ gluten in it, so many people without celiac also benefit from the diet. Too many parents on here assume their children have celiac if they do bc they feel better on a gluten-free diet. You shouldn't avoid gluten your whole life if you don't really have to. It may just be you benefiting from a healthy diet. There is only something like a 1 in 22 chance a first degree relative will have it too. Too many people assume their children have celiac, when really, if you were to look at research, it would be pretty rare for a family to have 4/5 people celiacs. So, if you want to avoid gluten forever and not even know if you have to, whatever makes you feel better, but, without a diagnoses, you don't know if it was even celiac to begin with, it could be osmething else.

[lightening16]

Hi

I have just been on the celiac, gluten free false negative roller coaster. I was having similar problems as you combined with a skin rash and things were just getting worse and worse. Went to the doctor and got a blood test. While waiting for results I went gluten free. This was a month as the test was over Christmas. I felt so much better right away. When I got the results I was shocked. So I went back to eating wheat for two weeks. The symptoms came back right way but worse. I have been gluten free for two weeks now and just starting to feel better again. If you can get tested while you challenge yourself then do so but you will not want to be on gluten for long, especially after feeling better. I still can't believe that the answer is so simple (yet really hard to do).

I have a feeling that all the "stats" on celiac disease are really old done before they realized that everyone show s the symptoms differently and at different stages. I definitely had a trigger, either pregnancy or gall bladder surgery. Since then I have been lactose intolerant and never understood how I could just become lactose intolerant.

Anyways, even my GP after hearing all my problems and looking at all my nutrient deficiencies has supported me going gluten free. Which is all I needed to feel that I was going down the right path.

Your body will tell you if you need to cut wheat out or not all you have to do is listen.

[loco-ladi]

.... it appears it is on my side of the family.

I have discovered that false negative blood tests are common, and the only real way to tell is to go gluten-free and see if your symptoms go away. My main symptoms are very bad abdominal cramps, gas, irritability, dry skin and trouble making decisions.

Five days ago I finally decided to give it a try. My main problem for years has been the horrible abdominal cramps and gas. I sit in an office and most days I am in agony from the cramps, and then I have horrible gas all night. On my first gluten-free day, I had no cramps at all and no gas. Pretty much the same results the next few days until yesterday. I travel a lot, and during a conference in Boston I ate some chicken that I thoguht was OK but then found out there was bread crums in the dish. I had some cramps and gas last night.

So I guess here's my questions.

Is it normal to find such quick relief from symptoms?

Should I consider having a day where I eat a lot of gluten and see if the symptoms are severe again, thus confirming a self-diagnosis?

I am a competitive marathon runner and eat very healthy anyway, so the diet changes don't scare me. I just want to be sure that gluten is my problem before I give up an accasional beer and pizza.

Thanks

Walt

You pretty much have proven you have it to me.... and seem to have done plenty of research to prove it to yourself..... so..... why do you sound like you dont believe it yet?

And who says you have to give up pizza and beer? They do make gluten-free beer now AND I eat pizza all the time, I just dont buy it from my local pizza place but make my own which by the way tastes alot better!

and WHY after this:

during a conference in Boston I ate some chicken that I thoguht was OK but then found out there was bread crums in the dish. I had some cramps and gas last night.

do you need to add more, you ate some and you had a reaction, case closed now you have to convince yourself because I am already convinced!

[IMWalt]

You pretty much have proven you have it to me.... you ate some and you had a reaction, case closed now you have to convince yourself because I am already convinced!

I guess I am hoping that it is not gluten causing my intestinal distress. I am a very healthy eater all of the time, and I love to cook and bake. My daughter is thrilled that I am trying this, and it is helping me to understand what she deals with on a daily basis, trying to eat gluten-free.

Funny story. My running partner of 5 years has grown used to me farting constantly when we run. Today he noticed the absence of gas. It is a big relief to me to not have to try holding the gas in all day at work. There just wasn't any again today.

Thanks for the info!

Walt

[mamasaidso]

My 21 year old daughter and I are newbies, too. She had a positive biopsy and negative blood panel. Her gastro doc wasn't looking for celiac when he did the endo but saw that the small intestine looked a little off and just took a couple biopsies from that area. It came back near total flattening of villi. Since she and I share similiar stomach problems, I asked my doctor to do a blood panel on me and it came back abnormal high. I am having an upper endo on Tuesday and we'll see what that brings to table. We have been gluten-free for a few weeks. I can relate to the toots. Last year I went to Europe with my cousin and after three days in Paris of eating bread, eggs, and cheese, she started walking in front of me.

You don't have to give up beer. Anheuser Busch makes a great gluten-free beer called Redbridge. We tried New Grist and it just didn't cut it. Now I'm working on the pizza part. My brother is coming to visit and I'm going to try to convince him, one to get tested, and two that he can still have the food he likes. Meanwhile we are determined to stay the path on this diet and exercise more.

Good luck to you.