Severe Skin Rash And Tremors In 80 Year Old Grandpa- Need Advice!

[queenieheather]

Hi! I'm looking for advice. I am thoroughly convinced that my grandpa is having Celiac or gluten intolerance symptoms. He is currently suffering with a pretty awful, highly pruritic skin rash that is diagnosed as "severe eczema" which has gotten significantly worse over the last year. He has had this rash for many years though I don't know exactly how long. He has had periods of spontaneous remission but it doesn't last long. It's all over his body pretty much but the scratchable areas are the worst-from scratching! He does have some GI issues with vitamin deficiencies, though I'm unsure of which and the severity at this time.

 

As a side note, Parkinson's disease has also been brought up due to him testing positive for the gene. He walks a little stooped and is sometimes shaky but he is 80 years old!  I am convinced these "symptoms", which are much, much less of an issue than the rash, is also gluten or related to homozygous MTHFR and not the beginning of parkinson's at all(he's known about the MTHFR  and has been taking methylB12 and folate for awhile now- that was a battle too!).

 

He is currently undergoing lots of "testing", mostly for allergies (lots of positives) and the doctors have told him that his symptoms are not Celiac or gluten intolerance related. His skin was biopsied years ago and "negative for DH" though I don't think it was ever a suspicion of his doctors. They're now talking about doing an extensive eczema treatment where he would have to stay away from home in a hotel in order to undergo lengthy daily treatments for 4 or 6 weeks. He has been seeing multiple doctors and they not only have not suggested a gluten-free trial, but have said that it won't help or is a waste of time.

 

As for family history, his own brother (in his mid-late 70's), his 2 children, my mom and aunt (who were both in their 50's), my cousin(my aunt's daughter- in her 30's) and her 2 school aged children have been diagnosed with Celiac Disease within the last 4-4 1/2 years. I went gluten-free the day my mom was diagnosed due to my own Hashimoto's disease, at age 24. I am now ABSOLUTELY SURE I have it too. My Hashi's antibodies are now negative and I now have more severe GI gluten reactions/CC reactions than my mom, though I have never had intestinal biopsies- nor will I ever. I strongly suspect my younger brother needs to be gluten-free, but he refuses regardless of his positive antibody status!

 

So! What can I do when the doctors refuse to even suggest a gluten-free trial, especially in light of the strong family history? My first thought was to take him to my awesome naturopathic MD, but she is quite expensive to see and I really think a food trial will give us the most definitive answer anways. I am looking to compile some evidence to refute the doctors' opinions and convince him to do a 2 month minimum gluten-free trial. Even better would be the whole30 or something along those lines. I know you can't FORCE anyone go gluten-free or change their diet, but I do believe with some evidence, anecdotes, articles, other posts, some educated nagging from me, etc. that he might give it a go. I'm going to speak with him later this week and really want to be armed and knowledgeable. Thank you so much in advance

[kareng]

I would think that a diagnosis of Celiac would be important in this case. Even if you could convince your Grandpa to eat gluten-free without one, hospitals, nursing homes, assisted living facilities. etc have no reason to even attempt to feed him gluten-free without a diagnosis.

 

I think you should push for a blood test before he goes gluten free.  It is recommended that all first degree relatives be tested.  

 

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[cyclinglady]

Can you actually convince him to get copies of his celiac panel? It might not have been a complete one. I tested positive to only one panel component and it was not the test given when they are running the panel on the cheap!

I know your frustration, but you can only do so much for him. He is a grown man.

[nvsmom]

Yes, get as many celiac disease tests run as possible because false negative are not rare.

 

These are all of the tests:

• tTG IgA and tTG IgG
• DGP IgA and DGP IgG
• EMA IGA
• total serum IgA (control test)
• AGA IgA and AGA IGG (older and less reliable anti-gliadin tests)
• endoscopic biopsy (6+ samples taken)
• dh biopsy (beside the rash, not on it)

From what I know of dh, which is not a large amount, those with dh are more prone to having negative blood tests even though they have celiac disease.

 

It is lovely that you are working hard to help him  Best wishes.