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Celiac's Husband

Some Advice Needed

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Hello All,

I Have been reading this board the last month. This is my first Post,I hope I do it right. As my name states I am the husband of a celiac. My darling wife was diagnosed about 2 months ago. Here is how it went down. She had surgery a year ago and prior was told her blood count was very low. After test is was determined that she was anemic. She has had GERD for about 10 years and has an awesome Gastro doctor. At her yearly examine she talked with the Gastro about her anemia. The Gastro did a colonoscopy looking for blood loss (turned out ok). She then did an endoscopy looking for a bleeding ulcer(no ulcer). During the endoscopy she tested for Celiac's. Came back positive. We are very greatful it was discovered. My wife has been gluten free and I have noticed as well as her a better quality of life(not as tired, better G.I. not as stressed, no more tingling,neuro problems). Here is my question. My wife and I have learned alot about Celiac's from this and other boards. At her follow up appointment it seems like we educated the Gastro doctor more than we got answers. We still have many questions(you all have been very helpful with what we have read on this board) but should we seek the advice of a dietician to help guide us with the diease management? We love the Gastro but are looking for someone who knows Celiacs inside and out. Any suggestions are welcomed.

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Is she struggling with the diet, or feeling like she isn't eating a balanced diet? If not, a dietitian probably wouldn't be worthwhile. I recently went to one, who is experienced with celiac and works with local support groups, because of my other food problems. While I wouldn't say that it was a wasted effort, I really didn't learn anything that I didn't already know from my own research. The main benefit for me was just to have someone confirm that I was doing the right things.

Something that might be of more benefit would be to join a local support group. That way you guys can get help and support for gluten-free living in your own community.


Carolyn

"When the going gets weird, the weird turn pro. "

- Hunter S. Thompson

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Husband, you will learn more here than anywhere! You would have to find a dietician who knows about celiac, most of them are as educated as her doctor. Just hang around a while and ask questions ... it gets easier.

Welcome!! Diagnosis is usually a blessing for us all, and the fact that it's controllable by diet is a bonus, even if it's not easy!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I went to a dietician before the diagnosis and she was the one who suggested to force the doc to do a celiac test. she was a lot of help for me when i was first starting but then again she literally had just come from a week long confrence on celiac. :)

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Husband, you will learn more here than anywhere! You would have to find a dietician who knows about celiac, most of them are as educated as her doctor. Just hang around a while and ask questions ... it gets easier.

Welcome!! Diagnosis is usually a blessing for us all, and the fact that it's controllable by diet is a bonus, even if it's not easy!

Frenchie & Carla,

Thanks for the advice. It is greatly appreciated. She is not struggling with the diet. She is doing very well and extremely comitted. We just want to make sure we are doing all the right things. Like I said it seems like we educated the Gastro (I.E. salad dressings, no licorice). We are not use to this. You all are a blessing and should probably have MD Degrees LOL.

Thanks

I went to a dietician before the diagnosis and she was the one who suggested to force the doc to do a celiac test. she was a lot of help for me when i was first starting but then again she literally had just come from a week long confrence on celiac. :)

Thanks Linds

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Frenchie & Carla,

Thanks for the advice. It is greatly appreciated. She is not struggling with the diet. She is doing very well and extremely comitted. We just want to make sure we are doing all the right things. Like I said it seems like we educated the Gastro (I.E. salad dressings, no licorice). We are not use to this. You all are a blessing and should probably have MD Degrees LOL.

Thanks

LOL

As far as salad dressings, all Kraft products will clearly label whether they have gluten, so you can read their labels and feel safe as long as it does not say wheat, oats, barley or rye ... or maybe you already knew that. B)


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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The general consensus here from many who have posted after they went to a dietician is that it was a waste of money. Most of the time, what they will do is take a page out of a binder that lists the basics of what not to have, but not by any means going into detail about toiletries, medications, glue on envelopes, etc. They will also give you a few websites to use for reference then that's it, end of consultation.

What I learned, I learned from here. The dietician I went to see didn't touch on anything to do with cross-contamination, hidden sources, etc. I didn't even know until I came here that I should get my own toaster!

Oh, by the way, welcome, and your wife is lucky to have you!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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When I got diagnosed, my GP said that if I really wanted to get better, then I should do the research myself and not see a dietician. When I was waiting for one of my many yearly blood tests, someone told me that two of her neighbors had been diagnosed with Celiac. One learned what to eat by himself and is doing great. The other went to a dietician to learn and she is not doing well at all. This is just my opinion and you really have to decide for yourself what is right for both of you.

BTW, welcome to the forum and your wife is lucky to have such a caring husband. Some on here are not so fortunate.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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