The Politics Of Determining Dh For My 95 Year Old Mother

[YoloGx]

My elderly mother (95 soon to be 96) has what I think is DH and borderline low thyroid plus celiac and I think some evidence of Sjogren's syndrome. My sister the nurse thinks I am nuts however. The low thyroid is a medical fact as well as the past itchy eyes and now itchy gums. She also has itchy skin with outbreaks although in other locations her skin looks good for someone her age.

My mother was part of an early 14 year study for celiac sprue back in the twenties and thirties at UCSF (University of California at San Francisco) headed by the then famous Karl F. Meyer, head of the Hooper Research Department at UCSF for thirty years. The results of which got buried I think by WWII when Meyers got involved in the war effort with different, more in demand research. If anyone knows about this study and could help me out here I would be greatful for the info... I may have to go to UCSF and research the old records. I could find no reference to it on the Internet.

What brought my mom in to the UCSF program to begin with was her Dermatitus Herpetiformis as well as her low thyroid, beginning at age 4. She was considered unique since she was lively and intelligent. A local doctor in Los Gatos, CA recommended her. Her mother also came from a Scandanavian/English family that was allergic to just about everything. My grandmother had one Swedish cousin that died at age 18 from malabsorption.

At the end of the study when my mother was 18, she thought she had grown out of her need to be on a low (almost no) carbohydrate diet. Even when she was on their program she had wheat (a thinly crusted wheat pie) once a week. These were different times with less knowledge than what we have now. This accounts for her opinion that a little wheat won't kill her. And indeed it hasn't. However it seems to me it has deteriorated her thinking capacity. When she is completely off all gluten she has an actual memory of the previous day, whereas when she has even a trace amount of gluten she loses it and cannot remember more than an hour ago. In previous years she suffered from depression and anxiety as well as often confusion and a variety of recurring joint problems and dry eyes plus cataracts (she got laser surgery for the cataracts).

Even small amounts of gluten seem to give her what I think is dermatitus herpetiformis.

The problem is that since I came back to help out here, I took my mother off all gluten these last two months except for what is in her medications--and she seems much better. She was eating gluten in the condiments and cereal plus had CC from using old glutened cutting boards etc. My sister and her doctor want to now test her for celiac at Kaiser Permanente--by first putting her on a gluten challenge diet given that I have asked her medications to be gluten free.

I wish they had seen fit to do this 3 years ago. Why now? Mainly because my sister couldn't be bothered to take the time to ask for gluten free medications. She believes my mother has no problems with gluten and that I have somehow "forced" her to change her habits against her will even though it has been my brother's decision to keep her on a mostly gluten free diet since I left this house previously.

Honestly having Mom completely off all gluten at this point makes more sense to me now that she seems to be getting better. However I probably have to go along with the doc and my sis say since Sue has Power of Attorney as well as Medical Power over my mom too.

Nevertheless Sue does listen to me a little so there is some maneuvering ground. I am staying with my mother and Sue realizes she needs to work with me. I also have the support of two of my brothers--especially concerning keeping mom home rather than in a board and care which would not likely put her on a gluten-free diet.

I have been reading about testing for gluten. Whereas it seems like a challenge could be really disastrous for most folks with celiac I wonder if it would be for my mother. She has after all been having trace gluten all along. So maybe it wouldn't be a complete disaster like I originally thought. Any thoughts on that?? For me it would be a disaster since I react much more strongly with migraines and occasionally diahrreah and, if exposure to gluten goes on for any length of time, disastrous ill health.

One proof that being off gluten more or less these last three years has helped my mother is that she no longer has to take medication to wet her eyes, so the Sjogren like symptoms have lessened greatly even though her gums remain a little "itchy". I doubt however that Kaiser Permanente even realizes she could have Sjogren's however...

Her DH or itchy scabby skin spots have also remained until recently. Again Kaiser so far has not been able to actually figure out what it is. At first they thought it was scabies and treated her for that without success. I wonder what it would take for them to consider that she has auto immune problems??

I am betting the itchy bumps and eventual scabs will reappear quickly if we have her eat gluten again. If so, could we have her tested for DH fairly promptly?? And have it show adequately? I would really hope she won't have to be on gluten for 3 or 4 months to get an adequate test. I am betting the gluten will pretty much destroy her memory in the meantime so less is better than more.

She had two itchy scabby areas on her face that were surgically removed about a month ago (at her hairline and chin). They had become cancerous. I asked my sister to have them test them for DH but I think they didn't do it quite right. They focused on what they cut off and found cancerous cells, not on the area next to the itchy bumpy areas like I read one must do more recently. Is that right?? Also, should she see a specialist for DH to determine this more accurately??

The bumpy spots on her legs disappeared this last month. She says her skin is a lot less itchy now. I am betting that will change with gluten reintroduced in her diet next week.

I am also wondering if using Enterolab for a stool test and genetic markers would be useful for DH etc. or unnecessary. Obviously a blood test would not likely show anything, especially now she has been mostly off gluten for three years.

What makes this so difficult is that my sister is convinced that my mother is getting Alzheimers and thus needs to be put in a home or watched 24/7. However Mom's dementia seems to go away or greatly lessen those times she is completely off gluten--according to both my observation and that of my boyfriend as well as my youngest brother.

My other brother remains non committal. He in turn seems permanently depressed, but that is another matter... He had a blood test for celiac and they say he doesn't have it. Since then I have learned they don't catch most celiacs by those blood tests--they are not sensitive like testing a stool sample would be. My sister Sue also had this same test with the same negative result. Of course they believe their doctors... Even though my sis has chronic diahrrea, painful joints and osteoporosis and my brother has itchy patches on his leg along with his constant mental fog.

This lessening of the dementia and return of memory upon removal of all trace gluten makes sense given recently reported research that claims that untreated celiacs often (70 %) have depressed blood flow through the carotid arteries to the brain, greatly affecting the pre-frontal lobe (i.e., cutting off blood supply by 1/3rd).

This is very political as you might guess on the home front. Any input/advice would be greatly appreciated. I don't really want to see a lawyer like my boyfriend suggests. I just want reason to prevail if at all possible.

Bea

[Skylark]

Yes, I would absolutely pursue the DH route. A specialist in DH is a good idea, so he will know how to do a proper biopsy. DH is a definite diagnosis of celiac and then you have some legal footing. I think your instincts are right about a tougher gluten challenge in someone her age.

[YoloGx]

Yes, I would absolutely pursue the DH route. A specialist in DH is a good idea, so he will know how to do a proper biopsy. DH is a definite diagnosis of celiac and then you have some legal footing. I think your instincts are right about a tougher gluten challenge in someone her age.

Thanks for the quick reply Skylark.

I will have to figure out who is a DH specialist around here. We live in Los Gatos near San Jose in the SF Bay area. We are going to see a DC at a holistic Sunnyvale clinic known for dealing with celiac tomorrow to get some advice. He's not an AMA guy however, which I think will be needed to get through to my sister the nurse.

Are you implying you think my mother would do OK with a gluten challenge at this point--or not??

Bea

[Skylark]

Sorry to be unclear. I don't think enough gluten to just trigger the DH would be a huge deal, since she ate a little gluten for so long.

I would be afraid a longer challenge with a lot of gluten could leave her very confused and flare-up the Sjogren's. The confusion is worrisome because she may be more prone to falling. If she only eats a little it might not be so bad and maybe you could catch the antibodies with Enterolab. You're going to have a tricky time with Enterolab in the legal system since it's not been FDA approved, but maybe it would be enough evidence for your brothers and sister?

If she were my mom I'd go with the DH avenue first, and cross my fingers that they could get a good skin biopsy that shows antibodies.

[YoloGx]

Sorry to be unclear. I don't think enough gluten to just trigger the DH would be a huge deal, since she ate a little gluten for so long.

I would be afraid a longer challenge with a lot of gluten could leave her very confused and flare-up the Sjogren's. The confusion is worrisome because she may be more prone to falling. If she only eats a little it might not be so bad and maybe you could catch the antibodies with Enterolab. You're going to have a tricky time with Enterolab in the legal system since it's not been FDA approved, but maybe it would be enough evidence for your brothers and sister?

If she were my mom I'd go with the DH avenue first, and cross my fingers that they could get a good skin biopsy that shows antibodies.

Again thanks for the intelligent reply.

Fortunately when my mother has fallen she hasn't broken anything. She seems to bounce back with no problem. She in fact is still very nimble and she has aged better than many. I think this is common actually with celiac. Our bones often don't get brittle with age and we often retain our youthfulness. Nevertheless I don't want her to injure herself. When her memory goes and no one is here she tends to burn whatever is on the stove -- melting the pot etc. This in itself is worrisome so actually someone is here all the time right now, when she is not at an adult day care during the day. However its put, its hard to see her like that with no memory when there really is a better choice available. I can't believe its not hard on her brain.

I am glad to hear you think just a little gluten should do the trick. I don't want gluten in the house here as long as I am staying here due to my own extreme sensitivity. She can get gluten elsewhere however, at her daycare or at a coffee shop etc. I will have to remind her to wash up afterward...

I will just have to try to find a decent DH specialist. It would be great if there were such at Kaiser (especially since its already paid for), but I have little faith in that possibility... Nevertheless I will look. Any leads here from anyone?? Anything less than AMA approved I am certain my sis will not believe. Its too bad Enterolab is not yet AMA certified. I am betting that will change eventually, eh?

[mushroom]

Bea, it took very little gluten for my husband to break out in DH. He had never had it before and wasn't really confident he was gluten intolerant (no testing, did it to make it easier for me, and found he felt better) so cheated with a bottle of beer here and there and some sourdough bread. That's all it took for him to break out on his forehead with what was so obviously DH. So I don't think your mom would have to do a full gluten challenge.

[YoloGx]

Bea, it took very little gluten for my husband to break out in DH. He had never had it before and wasn't really confident he was gluten intolerant (no testing, did it to make it easier for me, and found he felt better) so cheated with a bottle of beer here and there and some sourdough bread. That's all it took for him to break out on his forehead with what was so obviously DH. So I don't think your mom would have to do a full gluten challenge.

Thanks for the insight. Its a relief we won't have to do this very long. I am certain it will not only give her dh but also fog up her brain etc.

I still have to find a dermatologist who knows about DH testing. Whoever checked her at Kaiser recently obviously didn't know what he/she was doing.

The Health Now clinic we took my mother to today wouldn't even see her since she is on Medicaid. Didn't matter if we were going to pay them cash or not, they said it would be illegal since they are not Medicaid approved. Sheesh! What is the health care system coming to??

I am going to have to network through bay area celiacs and see what I can find...