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Some Advice Needed

Celiac's Husband

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Celiac's Husband Newbie
Celiac's Husband
Posted

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
frenchiemama
Posted

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
CarlaB
Posted

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
linds
Posted

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
Celiac's Husband
Posted
  • Author
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
CarlaB
Posted
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
Canadian Karen
Posted

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
mouse
Posted

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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      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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