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I was just diagnosed with Celiac today. I have been complaining of joint pain for years and more recently complaining of memory loss, anxiety and poor vision. My doctor requested I get tested for auto-immune diseases every year and this time Celiac came back positive.

This is all completely new to me. I don't think I know a single person with Celiac and not really sure where to start. I have no allergies and I am not picky so I have pretty much no restraints when it comes to putting food in my mouth. LOL! I was told I have "borderline" Celiac. My know-it-all husband thinks that I don't have to go completely gluten-free. Is he right?

I guess, I am looking for help/support because all of my favorites contain gluten! Also, let me say that I have not talked to my doctor yet. My cousin is a medical assistant at the doctors office I go to and I have been bugging her for results because I have been in so much pain lately.

Oh and should I get my 4 year old daughter tested for Celiac? Now that I think about it, she says her belly hurts every now and then after she eats (breakfast mainly).

Thanks!!

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I was just diagnosed with Celiac today. I have been complaining of joint pain for years and more recently complaining of memory loss, anxiety and poor vision. My doctor requested I get tested for auto-immune diseases every year and this time Celiac came back positive.

This is all completely new to me. I don't think I know a single person with Celiac and not really sure where to start. I have no allergies and I am not picky so I have pretty much no restraints when it comes to putting food in my mouth. LOL! I was told I have "borderline" Celiac. My know-it-all husband thinks that I don't have to go completely gluten-free. Is he right?

I guess, I am looking for help/support because all of my favorites contain gluten! Also, let me say that I have not talked to my doctor yet. My cousin is a medical assistant at the doctors office I go to and I have been bugging her for results because I have been in so much pain lately.

Oh and should I get my 4 year old daughter tested for Celiac? Now that I think about it, she says her belly hurts every now and then after she eats (breakfast mainly).

Thanks!!

1) your husband is wrong.

2) yes, you should have your daughter tested.

3) If you intend to have a biopsy, don't go gluten free yet.

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Hi Jcossentino, and welcome to the forum!2

You may be surprised at how many of your favorite foods can be adapted to gluten-free with a little tweak or 2-3. It may take several weeks to get relief of your symptoms, but way to go on figuring out what's going on with your body.

I agree with Frieze's recommendations, and wish you and your family well.

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1) your husband is wrong.

2) yes, you should have your daughter tested.

3) If you intend to have a biopsy, don't go gluten free yet.

I LOVE number one! LOL

Hopefully, I can see my doctor this week and we will discuss doing a biopsy.

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Hi Jcossentino, and welcome to the forum!2

You may be surprised at how many of your favorite foods can be adapted to gluten-free with a little tweak or 2-3. It may take several weeks to get relief of your symptoms, but way to go on figuring out what's going on with your body.

I agree with Frieze's recommendations, and wish you and your family well.

Thank you!! I hope I can figure out gluten-free pretty easily.

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Yes, definitely get daughter tested. Even if Celiac isn't evident now, it could show in the future!

You will find many new things to eat. My husband and son love the gluten free brownie mix from Betty Crocker!

Good luck to you.... You will begin to feel better soon I'm sure! Good luck and welcome to the board!

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    • Hi, Ok good advice and I am sincere when I say how much I appreciate a lot of the responses, advice and encouragement that have been posted here. I'm not sure what a nutrionist is but a dietician (here in the U.K.) is a heavily regulated medical profession and my dietician is based most of her week in a hospital where doctors and MD's as they are known refer patients to her for help. She works every day with celiacs, dh sufferers and people with crohns, ibs etc and seeing my skin, listened to what I was saying (particularly about how my redness and blisters resolved on a gluten free (though not wheat free) diet for several years, and sent a report to my doctor/MD requesting a battery of tests - tests that can indicate dh, celiac and associated complications. I also have a friend with a wheat allergy and two with celiac (all diagnosed) and they are encouraging me to go ahead with getting these particular tests. So that's great but reading the above quote that suggests that situations like sharing an oven used to cook gluten-containing pizza, should not cause a gluten reaction. I thought, my god what's the point of going through these tests if my recent reactions aren't actually to do with gluten. Although my dietician is concerned about possible dh and has been through years of medical school, I also really trust the advice of an advanced member on this site and if they think oven-sharing shouldn't cause any gluten reaction, what hope do I have with an MD? It has taken me years to pluck up the confidence to ask for any medical help because I feared that sort of response along with a focus on psychological issues and hormones etc early on in the thread (even though, I only started feeling depressed since yesterday). Actually, I'm a mental health nurse so it's good to see people are alert to these issues but I am also pretty familiar with depression and I know that many people with physical health problems are fobbed off by doctors with talk of depression, stress, and hormones. I'm sorry that I took the (above) quote to heart and I know that I allowed that to colour my perception of the whole thread, which has been helpful in many ways. Best wishes to you all, even those I didn't agree with! Rhian 
    • I thought maybe doing a trial period to see if he reacts positively to being gluten free and then adding it back to see if symptoms come back would maybe be helpful to the doctor? But I guess that's true, it might skew things regarding any future tests that might be warranted. 
    • If you haven't had her tested yet please do not go gluten free. Get the celiac testing first as if she does feel better gluten free when she has to go back on gluten for testing she may have much worse symptoms.  There will also be a higher risk of false negatives.
    • I did not mean to imply that you should put him on a gluten free diet.    If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy.  All celiac testing requires a patient to be consuming gluten.  The slightly equivocal TTG?  That warrants a gene test at the very least.   http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf  
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