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Some Advice Needed


Celiac's Husband

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Celiac's Husband Newbie

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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frenchiemama Collaborator

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.

CarlaB Enthusiast

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!

linds Apprentice

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. :)

Celiac's Husband Newbie
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

CarlaB Enthusiast
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)

Canadian Karen Community Regular

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


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mouse Enthusiast

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.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
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