going GF? test results...

[lorihadams]

Okay, so I think I am gluten sensitive....don't know if it is full blown celiacs cause my symptoms seem to be mild in comparison to others. So, here's my question....do I try to get off gluten on my own or do I go back on gluten for a couple weeks and get officially tested? I already feel like crap so what's a couple more weeks, right?

 

[miss_thenorth]

I know, in my case, I would never want to go back to gluten full time just to take a test. and the tests are not always accurate either.
I finally mastered a WW SD bread for my kids. I had a piece of it two days a go. Yesterday was not a fun day for me, but it was a mild reaction. I could not go back to full blown reactions for a coupla weeks just for a test, a test that may or may not tell me what I already know.

JMO , but when you go to see your doc, tell him/her your experience.

 

[Dace]

How long have you been off gluten?

If it is a few days, then I say start eating it and book an appointment ASAP......although that is sort of a double edge sword, here's why:
If you do not get tested you will always wonder about the accuracy of your self diagnosis. When it starts to get hard ( and it will!) you are going to doubt that you have a gluten sensitivity.
On the other hand, you can go back to gluten, feel like crap, get tested and still not have definitive answers.....yet KNOW that you feel better *off* gluten.

You have to decide what to do based on your own personality and knowing how you will feel about a self diagnosis.

I very clearly see that my DD8 gets sick when she eats gluten, yet things slip thru sometimes and she has no reaction which leaves me scratching my head questioning the wisdom of self diagnosis

 

[miss_thenorth]

Yes, Dace, sometimes I think the same thing with my own self diagnosis. For me, It depends on how much of gluten I eat. that peice of bread sent me to the porcelain throne. but I can eat a small slice of pizza (1/8 of a 12" pizza with a sourdough crust, and be fine. If I eat more than that, I frequent the throne again. For me, I have a limit. And only if it is SD. last Easter, I had 1/2 a dinner roll--sick for a few days.

 

[TanksHill]

My 7 yo was tested. They said she was not allergic. I definitely think she has an intolerance. Anyways Celiacs in in the family. So when my dh sister was trying to get diagnosed her lame doctor told her to stop eating before they tested. Which we all know will skew the test. So she had the DNA test. It turned out both her Mother and Father are carriers and her father has it. Explains his Vitiligo and other illnesses.

What I am thinking is maybe you could go armed with information. Tell them you think you have a GF allergy even mention others in your family have been diagnosed. (even if it's not true). But tell them you have stopped eating gluten and you know this will cause the test not to read right. Ask if you can skip the blood test and go straight to the genetic testing. This way if you carry the gene you will probably need to just take the kids off gluten as well.

I know Dace has gone through this exact thing. It's hard. I have a link for a web site somewhere for a doctor who specializes in Celiacs research here in Ca. I will find it for you. Maybe it will help you arm yourself.

On another thread you were talking about GF flour being expensive. Can you grind your own?? Here in ca Bob's Red mill mix is pretty easy to find. If there is a sale I would gladly send you some.

I am definitely not very experienced in this but I think it may be in my future as well.

I will find that link. Feel better.

gina

 

[lorihadams]

I have chronic constipation....I have been on stool softeners for years. My grandmother is too. She has gerd, she will throw up her food in the middle of eating....at the table. She can only take a few bites of anything and then has to stop, she is constantly bloated and refuses to drink anything cause she says it makes her even more bloated. My paternal grandmother, who has full blown celiacs, is having heart problems and chronic diarrhea and cannot keep on weight. She is 5'9" and weighs 98lbs. My dad has celiacs but the test didn't show it cause he had been off gluten for 2 weeks when he got tested. He felt better off gluten but went back to eating whatever (even though he is violently ill) cause the test didn't show a sensitivity.

Given all the family history I think I probably have a sensitivity. It may not be full blown celiacs but I think the sensitivity is there. I don't know what to do cause on top of this I have stopped my birth control pills as well as my cymbalta.

I also wonder if I am anemic, possibly due to damage from the gluten.

Lets face it....I'm a hot mess right now

 

[Henrietta23]

DS was off gluten and dairy for a month when he was tested. He still tested as intolerant AND allergic to wheat, barley, rye, etc. and cow's milk.
I had GERD and IBS issues before going off gluten. They have completely resolved for me! Unless I cheat, which I've stopped doing, then BANG! Not worth the pain!

 

[miss_thenorth]

That is why I asked about your B12. I had B12 anemia due (in my own dx of course) to the gluten. I used to get a shot every month, for the last 8 years. Now, I can supplement --I can tell I need it about every 3 months. I will be going to the naturpoath in the new year, so I can really keep track of it.

 

[Dace]

Keep in mind that celiacs, gluten intolerance or sensitivity are not the same as an allergy.
Gina, I am pretty sure you know this and are just mixing the words, but....for someone who is new to these terms it can cause confusion. That is part of the challenge with testing....it is just not a clear cut as an allergy. There is some art to reading the gliadin antibody test. My DDs doc completely overlooked her "abnormal" test result
In my case I went back 5 years later and requested the lab results.....right there in black and white, elevated antibody levels and the word ABNORMAL

Now with my little one, I have not gone back to collect the lab results....I had her off gluten when she was tested and I knew the test would be skewed, but we did not have insurance and I was looking for a quick and easy answer. Now we do have insurance so I need to take her in for a complete work up because she still often does not feel great, so there may be more going on....or she is so used to being doted on when she doesn't feel good that she has become a hypocondriac!

I suggest, start simple....get the gliadin antibody blood test. If that does not show anything, then move on to the genetic testing....unless your dr will just do it all!

Good luck sweetie, you WILL work it out!

 

[lorihadams]

Thanks ya'll, I don't have a large circle of friends and you guys are the only ones that I feel like I can talk to about all this without people thinking I'm off my rocker.