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Problem With Mom And Dad...

elye

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elye Community Regular
elye
Posted

Well, I've been presented with a problem that I hope somebody has shared or can give me some insights on. Both of my parents recently had the blood work done for celiac. I have long suspected my dad is, as he's had the classic symptoms for most of my life. Recently, I've suspected it in my mom as she is often constipated and has had bad arthritis for years, along with clinical depression. One of them, at the very least, likely has it, because I do. So the results came back negative for both of them. Now, we all know what a negative celiac blood panel means--often NOTHING. Of course, the easy way to go about diagnosing this is to go gluten-free for a while, but it isn't that easy for my parents. They are living in a retirement residence, where all of their meals are prepared for them. The staff will prepare gluten-free meals for residents (there are two celiacs living there), if they are provided with a doctor's letter for proof of the illness. You see where this is going...because the tests were negative, both of my parents "most certainly" are not celiac (!). It is frustrating me so much, because I am now convinced that my dad's digestive problems, his arthritis, his Parkinson's, his neuropathy, and maybe my mom's degenerative disc disease, her depression and her muscular pain could all be alleviated with a gluten-free diet. I am so angry that doctors still know so little about this, and when I mention to the GP that untreated gluten sensitivity can lead to neurological diseases and the other conditions my dad is exhibiting, he looks at me like I'm out of my mind. So, no doctor's letter for them....ggggrrrrrrr.......

Any advice?

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Smunkeemom Enthusiast
Smunkeemom
Posted

get a different doctor?

a lot of time it depends on what you go in with, get a "second opinion" and tell them straight out that you think the test was a false neg. and that you are looking for support on trying the gluten free diet as a diagnostic tool, and that the only way to do that is to get a note from the doctor. It's quite possible that the new doctor can write a note "prescribing" a gluten free diet, without actually having to say they have celiac.

Guest greengirl
Guest greengirl
Posted

Get them tested by Enterolab! Kenneth Fine is a doctor and his results were accepted by my GI. I know of others on the board who have had their results validated by their doctors.

Christine

tarnalberry Community Regular
tarnalberry
Posted

My, likely less than popular, advice:

1) realize that these conditions can occur unrelated to celiac. I think we're all prone to finding celiac in everything we see, whether it's there or not. it is possible that they really are negative. negative tests don't mean NOTHING - false negatives don't occur 100% of the time. ;-)

1a) investigate other food allergies/intolerances - maybe it is something else they are eating, that can be identified, that you can pin down via an 'official' route

1b) try another doctor, but don't get your hopes up too much

1c) try genetic testing to see if you've got a reasonable chance to have them test positive for celiac

1d) see if the place would take results from enterolab and go that route

2) ask if the nutritionist and/or chef can work with you to reduce their gluten intake. yes, I know it's hardly the same as going gluten-free, but it looks like it's the only thing you've got to work with at this particular place. it would be relatively easy to work with them on naturally low-gluten options (rice, no bread, etc.) - basically everything but the trace sources (modified food starch and cross contamination) since, in my understanding, most of those places are doing a fair amount of their own cooking. they may well still balk at the suggestion, however.

3) move them out of the nursing home into a place you can control their diet (doesn't really sound like a good option to me) or into a facility that won't require a doctor's note to change their diet (don't know if one exists, but it may be worth looking)

CarlaB Enthusiast
CarlaB
Posted

My internist accepted my Enterolab test. He didn't officially say "You have celiac," but he said he was going to start using Enterolab. I believe I'd be able to get a note from him if I ever needed one saying at least that I was gluten-intolerant. Also, he's a friend of mine and cannot deny how much better I look/feel. He's finally stopped looking me over like he thinks I might die (you know the look).

elye Community Regular
elye
Posted
  • Author

Excellent food for thought from all of you...I am in Ottawa (Canada) and I have not heard of Enterolab anywhere else but on this panel. Does anyone know if there is "Enterolab" up here?

CarlaB Enthusiast
CarlaB
Posted

Check their website ... www.enterolab.com

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jerseyangel Proficient
jerseyangel
Posted

Ursula, who is also in Canada, posted recently about Enterolab and if they also serve Canada. I'm pretty sure they do--you could PM her. I'll try and find the post.

Found it--

Open Original Shared Link

elye Community Regular
elye
Posted
  • Author

I just checked out the website. I'll check to see if my parent's insurance will cover any of the cost. Sounds great...don't know why we don't have this in Canada. Now, is this stool test something we do at home ourselves, or something we collect for (!?) and send back for THEM to analyze?

jerseyangel Proficient
jerseyangel
Posted

You collect at home, and send back to them to analyze.

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