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Jodie2DQ2

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Jodie2DQ2 Apprentice
Jodie2DQ2
Posted

HI, my name is Jodie and I am from Idaho. I have been getting alot of information from this site and want to say thanks. My story is alot like some people on here. I had not joined due to really wondering if celiac is what I have. Before last summer I had a history of dental problems,then came the acid reflux and then 3 miscarriages. It was not until I completely changed my diet to whole wheat everything to lower my cholesterol. The GI Dr. kept saying more fiber..more water and the sicker I got. Then I decided to quit smoking and things went from bad to worse. After a colonoscopy and endoscopy(no biopsies were done.) I could not even get out of bed. I got the usual looks from the doctors, told I needed a psychiatrist etc. I never even knew of Celiac disease. I was losing 10lbs a month and the Dr's knew nothing. So I went to a naturalpath Dr. who just put me on an elimination diet and through messing up did she tell me to get tested for celiac. By the time I got in I was not going to eat it for a test. But the Gi Dr. said if it was celiac it would still show up in the blood for up to a year.It all came back negative. It absolutely burned when I ate Gluten. The allergist did genetic testing which came back double DQ2. It really has been a nightmare with the GI doctors here who clearly say it is not Celiac but can not explain to me why it burns my stomach only when I eat something with gluten. I also have a 2 1/2 year old who had been sick every 2 weeks after he was on regular food. He has been off gluten for 3 months and this is the longest he has not been sick.So I am better but still having issues. But I have to say I would not be where I am today with the information from here. Thank you!

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missy'smom Collaborator
missy'smom
Posted

Welcome. We have to trust our intuition. We know our bodies best. I had a doctor tell me he thought I had Celiac Disease but I haven't been through the testing because we were in the middle of moving. I know that he was right and I am so happy to have my health back. Glad to hear you and your son are feeling better too.

psawyer Proficient
psawyer
Posted

Welcome to our forum. You will finds lots of helpful people here with answers to your questions. We were all once new to this; I`ll be seven years soon, and feel like an old pro, but there are a number of folks here who have been diagnosed a lot longer.

There is no such thing as a stupid question here. Ask away.

BTW, there is some thought that smoking may prevent (or obscure) celiac symptoms. I quit in 1990, but did not have serious symptoms until about five years later. I can now look back and see what may well have been celiac-related issues in my teens and childhood. They went away for over 20 years, so who knows.

pedro Explorer
pedro
Posted

Hi and welcome.

Here you will find lots of information. I had doctor's suggesting that the problems was in my head, and prescribed paregoric elixir for the pain. That GI doctor is long gone.

We know our bodies better than anyone else.

I hope you get better, keep us inform.

Best regards to you.

Jodie2DQ2 Apprentice
Jodie2DQ2
Posted
  • Author

Thanks for the welcome! This has been quite a learning process and I am sooo sensitive that I am really careful before anything goes in my mouth! This is great to have other people to talk with. I do not feel so alone! Jodie

mftnchn Explorer
mftnchn
Posted

Hi Jodie and welcome,

Glad you are finding some answers and sorry to hear about all you have been through.

I'm curious, do you know what your genes are specifically? Wonder if your double DQ2 is the same as mine.

little d Enthusiast
little d
Posted

Welcome to the board

I have learned a lot from everybody here and I know you will too. I hope that you start to feel better soon

Donna

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Jodie2DQ2 Apprentice
Jodie2DQ2
Posted
  • Author
Hi Jodie and welcome,

Glad you are finding some answers and sorry to hear about all you have been through.

I'm curious, do you know what your genes are specifically? Wonder if your double DQ2 is the same as mine.

Hi, I just pulled my generic testing from Prometheus...here is what is says. HLA DQ allelic variants associated with celiac disease detected. Homozygous DQB1*0201 ( DQA1*05-DQB1*0201 and DQA1*05-DQB1*0201) Then it says due to this I have a 5 fold risk of developing celiac and a more severe. Jodie

mftnchn Explorer
mftnchn
Posted
Hi, I just pulled my generic testing from Prometheus...here is what is says. HLA DQ allelic variants associated with celiac disease detected. Homozygous DQB1*0201 ( DQA1*05-DQB1*0201 and DQA1*05-DQB1*0201) Then it says due to this I have a 5 fold risk of developing celiac and a more severe. Jodie

I seem to have the same genes, though symptoms aren't quite the same. Found a couple of references on line to homozygous DQ2 as having more severity as well as longer recovery period after going gluten-free. How long have you been gluten-free?

NoGluGirl Contributor
NoGluGirl
Posted
HI, my name is Jodie and I am from Idaho. I have been getting alot of information from this site and want to say thanks. My story is alot like some people on here. I had not joined due to really wondering if celiac is what I have. Before last summer I had a history of dental problems,then came the acid reflux and then 3 miscarriages. It was not until I completely changed my diet to whole wheat everything to lower my cholesterol. The GI Dr. kept saying more fiber..more water and the sicker I got. Then I decided to quit smoking and things went from bad to worse. After a colonoscopy and endoscopy(no biopsies were done.) I could not even get out of bed. I got the usual looks from the doctors, told I needed a psychiatrist etc. I never even knew of Celiac disease. I was losing 10lbs a month and the Dr's knew nothing. So I went to a naturalpath Dr. who just put me on an elimination diet and through messing up did she tell me to get tested for celiac. By the time I got in I was not going to eat it for a test. But the Gi Dr. said if it was celiac it would still show up in the blood for up to a year.It all came back negative. It absolutely burned when I ate Gluten. The allergist did genetic testing which came back double DQ2. It really has been a nightmare with the GI doctors here who clearly say it is not Celiac but can not explain to me why it burns my stomach only when I eat something with gluten. I also have a 2 1/2 year old who had been sick every 2 weeks after he was on regular food. He has been off gluten for 3 months and this is the longest he has not been sick.So I am better but still having issues. But I have to say I would not be where I am today with the information from here. Thank you!

Dear Jodie,

Boy does that story sound like mine! GI docs are so stupid! They told me I could not have Celiac either! They know nothing about this illness at all! Thank God I switched to a holistic physician last year! I have a little present for you to welcome you to the forum!

I have a list that should really help. This is overwhelming. I went through this with myself six months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Yoplait Yogurts* (Includes the Whips! I recommend the Latte! The clearly label gluten if present)

Jell-O Pudding Snacks* (Kraft makes them, so they are clearly labeled if gluten is present)

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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