Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Suggestions For Elderly Mom

Tasha2004

Recommended Posts

Tasha2004 Contributor
Tasha2004
Posted

Haven't checked in since the last time this happened, but here goes.

My Mom is 83. She has had Celiac for over 20 years.

She does really well keeping gluten free, but, now and then I think maybe she slips up a bit (with things like vitamin supplements, and restaurants she isnt sure about).

Two years ago she went through some depression, which led to her thinking she had all sorts of things wrong with her. She had a lot of tests done, they never found anything and when the depression was treated, she dropped all the complaints she had. Now this has started up again, and I am trying to prevent a whole series of unnecessary medical tests.

My first thought, no one ever checks her blood to see if there is gluten creeping in.

I would assume an IgA would work, but last time I did this, I dont think the primary care doctor even ordered the correct blood test. I need to make sure on which one to ask about. The doctor thinks there is no way that gluten could be creeping in, and that once you are diagnosed that is the end of the need for testing.

This week she saw a gastro doctor for an annual follow up visit. She told that doctor she was feeling a fullness in her abdomen. That doctor also did not order any blood test to check on gluten, but ordered a bladder emptying test and ultrasound of female organs. Mom had a full abdominal cavity CT scan two years ago, when she had the same complaint and they never saw anything wrong with anything. She also had cancer screeings, and vascular tests of her abdomen etc. Again, they never found one thing wrong and her complaints went away when the depression was treated.

She is seeing her primary doc on Monday for a follow up to some edema in her legs. I suggested we go with that first, rather than the bladder test etc. The gastro had ordered the bladder test, and ultrasound putting down 'complications of Celiac" as the reasons for ordering the tests. ? ? ?huh??

If this isnt making sense to anyone here, it sure isnt to me. I just want my ducks in a row before I take her to the doctor Monday.

So, if anyone can suggest what to look for, ask about etc. please can you reply to this post????

thanks.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

This is one possibility: Open Original Shared Link

Tasha2004 Contributor
Tasha2004
Posted
  • Author

I kinda sorta dont think so.

Because as I said, last time she had the same complaint, they gave her every single test in the book including MRI's, CT Scans, Abdominal dopplar, Ultrasounds and blood screening for cancer.

Once she was on anti-dpressants, all her tummy woes and other fears went away.

She developed symptoms after a cancer doctor visited her Celiac support group.

The doctors determined she had been coming up with a lot of symptoms, simply by reading about things (and because she was depressed and convinced she was sick.)

melmak5 Contributor
melmak5
Posted

Testing for antibodies isn't a bad idea... there can be false negatives, which could lead your mom down the path of "lets find out what else is wrong with me" and more medical tests being ordered.

If she is open to it, maybe you could go through her kitchen, pantry and medicine cupboards and go a gluten-free spring cleaning.

If she takes and rx, it would be wise to put an allergy alert on her account at the pharmacy so they at least know to check if there is gluten in any of her medications (you often have to check yourself because many staff persons are not trained to know what gluten is or be able to decipher it from an ingredient label; they can tell you what drugs are in there, but not necessarily what the starch binders are)

Does your mom think she has been getting glutened as well?

Tasha2004 Contributor
Tasha2004
Posted
  • Author
Testing for antibodies isn't a bad idea... there can be false negatives, which could lead your mom down the path of "lets find out what else is wrong with me" and more medical tests being ordered.

If she is open to it, maybe you could go through her kitchen, pantry and medicine cupboards and go a gluten-free spring cleaning.

If she takes and rx, it would be wise to put an allergy alert on her account at the pharmacy so they at least know to check if there is gluten in any of her medications (you often have to check yourself because many staff persons are not trained to know what gluten is or be able to decipher it from an ingredient label; they can tell you what drugs are in there, but not necessarily what the starch binders are)

Does your mom think she has been getting glutened as well?

Well, her description of how she says she feels, is the same as in the past when she did accidentally ingest some gluten. And she isnt opposed to having it checked.

Her meds consist only of 2 blood pressure meds, that's it plus the antidepressant.

She did have to go into the hospital last time this happened, and we determined she had been buying lots of supplements and vitamins from all over the place, and things like odd herbal teas etc. Her whole system was off, and they had to work with her sodium levels.

I tried to clean out the house while she was in the hospital, but I think she did go and buy more stuff again in the last two years.

Also, she seems to have dropped her guard a tiny bit when she eats out....especially if I am not with her.

My concern is Asian restaurants where we're not guaranteed the kitchen keeps any food separate.

Need advice on ttg or Gliadin IgA, IgG?

The doctor will do it for me, as long as I prove I know what I am talking about!

Last time I supplied the doctor with research articles.......

ang1e0251 Contributor
ang1e0251
Posted

I would have her vitamin levels checked too. I'm reading a book on magnesium and finding I'm low. The edema could be that but I also have edema when I'm glutened.

Tasha2004 Contributor
Tasha2004
Posted
  • Author
I would have her vitamin levels checked too. I'm reading a book on magnesium and finding I'm low. The edema could be that but I also have edema when I'm glutened.

The Edema is in both legs and both knees.

Do we have any documentation anywhere that says this is a possible Celiac related problem?

Magnesium levels have recently been checked and things are fine.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
The Edema is in both legs and both knees.

Do we have any documentation anywhere that says this is a possible Celiac related problem?

Magnesium levels have recently been checked and things are fine.

Here is a good article, the info on edema is a little way down on the page:

Open Original Shared Link

"2. Signs and symptoms of malnutrition and vitamin or mineral deficiencies

Symptoms of malnutrition and vitamin or mineral deficiencies include: weight loss, fluid retention, anemia, osteoporosis, bruising easily, peripheral neuropathy (nerve damage), infertility, and muscle weakness.

Weight loss and fluid retention: Weight loss is the direct result of inadequate absorption of carbohydrates, proteins and fat. However, weight loss may not always occur because patients with celiac disease often have enormous appetites that compensate for the reduced absorption of nutrients. Moreover, weight loss can be masked by fluid retention. Fluid retention occurs in advanced malnutrition because the reduced absorption of protein results in low protein levels in the blood. High protein levels in the blood are necessary to keep fluid from leaking out of blood vessels and into the body's tissues. When blood protein levels fall as in celiac disease, fluid leaks into many tissues (edema) but particularly the ankles and feet, which swell due to the edema."

melmak5 Contributor
melmak5
Posted

Going out to eat - maybe you could make copies of dining out cards for her. Just paper ones with space for the server to write her order and table number on it so that if she does go out to eat it will be easier for her to communicate that she cannot eat gluten without her feeling like she needs to talk about it a bunch.

Supplements and teas get tricky. I know of at least two "tummy teas" that contain barley in them. It was one of the last places I would have expected gluten to be, but yeah, it sounds like she might be ingesting gluten.

The other thing to look into is that some supplements can interfere with other drugs so she needs to talk to the doctor who prescribed her the antidepressants to make sure they aren't counteracting each other.

Her antidepressant levels might also need to be checked (usually via blood work). If she has gained or lost weight they also might need to be adjusted.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...