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jldanforth

New To Gluten Intolerance

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Hi, I am new to this board and have a few questions. I have not been diagnosed as having Celiac disease. I have had a hx of IBS (mostly self-diagnosed) and since last fall, if not before, have had the additional problem of abd bloating. Sometimes at night it has been severe enough to keep me up and walking the floor with low abd pain, gas pains and severe bloating.

I tried a program I found on the web to discover if I was intolerant to any foods - it involved a detection diet. I had trouble following it for more than 8-9 days at a time. I did find that dairy products (especially w/high fat content) did worsen the IBS with diarrhea, however it did not help the bloating.

My MD ran a few blood tests and the IgG came back elevated, his suggestion was to 'decrease the amount of wheat' I eat.

I have since tried numerous times to eliminate gluten or eliminate dairy or am currently trying to eliminate both.

I am having an awful time sticking to this. I am hoping if I can follow it for a month or more it will give me a better idea if this is the cause of my GI problems. When I ate mostly fruits, veggies, brown rice and meats (again for about 5 days) the bloating was decreasing.

I have been tested for allergies to wheat and dairy and they were negative.

I don't know if I am doing the right thing by trying to discover if gluten and/or diary intolerance is the problem or if i should request additional testing or see a nutrionist or ???

Any thoughts or histories on how people found they were gluten inotlerant would be helpful and any suggestions for following a gluten-free diet for an extended period would also be appreciated.

Thanks

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I don't know if I am doing the right thing by trying to discover if gluten and/or diary intolerance is the problem or if i should request additional testing or see a nutrionist or ???

Any thoughts or histories on how people found they were gluten inotlerant would be helpful and any suggestions for following a gluten-free diet for an extended period would also be appreciated.

Thanks

My suggestion would be to follow a very strict gluten and dairy free diet for at leasst a few weeks. However, you you feel you want a diagnosis backed up by medical tests, then you should continue eating gluten until you have the tests.

My blood and biopsy were both negative, but I have never felt better since going gluten-free. All of my intestinal problems are gone. And when I eat gluten, they all come back. That's proof enough for me.

It is tough staying on the diet at first, but there are plenty of gluten-free foods you can eat. I have found it to be a great way to introduce new foods to my diet.

Good luck!

Walt


Daughter diagnosed via positve blood work 09/2005 - she had negative biopsy

Sister Dx via bloodwork

Nephew has daughter with celiac disease Dx'd at age 6 months

Me - negative blood and biopsy, but HUGE dietary response. No question in my mind.

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i'm new to this too but my first thought would be for the doctor to take more blood and run a Celiac panel. that's what my doctor did (while i was still on gluten), it came back positive so i was sent for the biopsy (still on gluten). i just got the results - negative - and now my doctor is sending me for more blood work to check for genetic markers. in the meantime, i am responding well on the diet. i will continue regardless of the outcome but i want to know if i have Celiac or just a gluten intolerance.

as far as the diet, this board is a great source of information. if i ever want to know if something contains gluten, i usually Google that specific item with gluten-free (i.e. ketchup gluten free) and it will usually point me to this board where someone has already researched it and posted their findings. you can also call the food company but i'm not comfortable explaining exactly what gluten is to people yet! LOL

depending on where you live, most grocery stores have at least a small gluten-free section. i currently live near a Wegmans and it's a dream shopping there. they label all their branded food that is gluten free very clearly on the front of the package so there's no guess work. i've never been to Whole Foods but i hear they have some great stuff as well. there are also websites where you can order foods but i think at first it's easiest to stick to simple foods that you know do not contain gluten. oh and some people can't digest dairy for a while until their intestines heal so that may be why you're experiencing more symptoms when you consume it.

good luck.


5/23/2008 - blood positive for antibodies

6/24/2008 - negative biopsy

8/11/2008 - DQ2 gene present

7/1/2008 - gluten-free

(and dairy-light until 12/1/2008)

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Try eliminating gluten and lactose (milk sugar) first. This means no wheat, rye, barley, oats and no whole unfermented milk products, but butter and aged hard cheese and gluten free yoghurt might be okay.

Typically what goes wrong is that people forget to add fat to these higher protein lower carbohydrate diets and they end up getting hungry all the time. So add in olive oil, mayonaise, coconut oil or milk, nuts in some form to each meal. Fat is the slowest burning fuel, protein the second, carbs the first thing used.

The other thing you need to do is supplement with a gluten free calcium, magnesium, and a B complex mulitvitamin, which should help with a lot of cravings.

Try looking at the specific carbohydrate diet for food ideas.

I am completely cynical on the medical profession and would not rely on them for testing to motivate me to do anything, unless I lived in another country. All they are trying to do here in the US is milk the insurance companies for things they will pay for irregardless of what the patient is experiencing.

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