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Coping With Stubborn Siblings


stemanndemon

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stemanndemon Newbie

Hi,

I believe my mom has either celiac disease or non-celiac gluten intolerance like me. I have the HLA-DQ1 gene and have had an elevated igG reading. My symptoms have been primarily neurological (mood swings, ADD problems, etc.) although earlier on I did have plenty of spastic colon sympoms.

In reading the work of Mario Hadjivassiliou and Allesio Fasano, I've come to believe that my mother's "Alzheimer's disease" is really gluten intolerance. She's always had ADD like symptoms, learning difficulties, anxiety and a some balance problems, (ataxia?). She's also had serious problems with constipation. I've been sending articles and my test results to my sisters but they won't even discuss it with me. My mom lives with my sister Inge, but believes that the neurologist knows all there is to know about dementia.

I sent an article that I found on the internet about an elderly lady who was diagnosed with Alzheimer's and RECOVERED on the gluten-free diet and specifically targeted supplements. It took two years but she REGAINED her memory and her daily living skills. See link below:

Open Original Shared Link

What can I do to convince them to give her the tests? What can I do to convince them that a gluten-free diet is worth trying?


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ianm Apprentice

Some people just refuse to believe that a food that billions of people eat every day could be so toxic. All you can do is gather as much information as possible and don't back down. You are in for a tough fight.

Carriefaith Enthusiast

ianm is right, this will be tough. I think you are doing the right thing by poiting them in the right direction. Unfortunately, it is ultimately up to them to take your advice or not.

Maybe try explaining that although doctors are well educated they are only human and may miss important signs and signals, especially from a disease that is so underdiagnosed.

It is horrible that your mother has Alzheimer's disease and she is very lucky to have you to do all this research for her. I think the best thing to do now is be persistent. People will usually give in if you're persistant enough.

Good luck!

cdford Contributor

I am a point in case for your argument. One of my main symptoms was the "fog of fibromyalgia" and other mental concerns. As long as I stay on my ALZ med, I do fine. I let it go and the mild dementia returns enough so that my family starts asking questions. Yes, gluten can trigger what appears to be dementia but really isn't. I use Exelon, by the way. In my case I am so young that they were pretty certain it was not ALZ. They knew to look elsewhere, they just did not initially know where to look.

stef-the-kicking-cuty Enthusiast

Hi stemanndemon,

I think, you're on the right track. I already thought that last year, but nobody believed me and I didn't have evidence for this. The mother of my mother-in-law lives in an elderly home, because she can't take care of herself anymore and has Alzheimer's. I said that to my mother-in-law MONTHS ago and told her I'm 100% positive that a glutenfree diet would help. She doesn't believe me. And her mother has days, where she's really fine and she remembers her again suddenly. And I told her, 'gee, maybe she had glutenfree food by coincidence for a while???'. And that woman is really skinny, too. So you might think, her body doesn't get enough nutrition and stuff.

It's only logical in my opinion. Celiacs have "brain fog" and forget a lot, so it also can be there in a more severe stage like Alzheimer's. I mean, it makes sense.

Yes, this will be tough. But I would tell your sister, that doctors don't know everything. And I would tell her, that even if you find out later, that it doesn't work. What can you loose, if you try this? Absolutely nothing. And in a few years, when it's too late maybe and they'll find out, that you were on the right track, then you guys kick yourselves in the butt for not at least trying it...

And if you guys try it and it worked and your mom is fine again, make this public, so that it gets to be known more. I really DO think, this works.

ianm Apprentice

My brain fog would get so bad sometimes that I couldn't remember much of anything and would get disoriented. I would forget where I was at, where I was going and why. It would come as no surprise to anyone who has experienced brain fog that Alzheimers and gluten are linked.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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