Jump to content

  • 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

It's Official... My Mom Has Celiac!

Mother of Jibril

Recommended Posts

Mother of Jibril Enthusiast
Mother of Jibril
Posted

Six months ago I was diagnosed with autoimmune hypothyroidism. I kept reading about a possible connection to gluten... and I was having abdominal pain... so after checking with an allergist I went on a gluten-free diet. Wow. What a HUGE difference it made. I wasn't able to get an accurate blood test, but the DQ8 gene, a couple of other autoimmune disorders, and a positive response to the diet was enough evidence to make me stick with it.

Anyway... when I saw my parents over the holidays they certainly noticed the change in my weight (I've lost about 30 pounds) and my skin (which hasn't looked this good since I hit puberty!). I was talking with my mom and I told her she really should get tested for celiac disease. And she listened! :lol: The blood test came back positive, so now she has an appointment to have her digestive system examined with a pill cam.

My mom is 61 years old and has been sick ever since I can remember. Over the last thirty years she has been diagnosed with diverticulitis, IBS, depression, diabetes (which she's now taking insulin for), fibromyalgia, chronic fatigue, endometriosis (hysterectomy), arthritis (knee replacement), neuropathy, and migraine headaches. I hope she's able to adapt to the gluten-free diet and stick with it!!! She really deserves to feel better.

Keeping in mind that my mom has a lot of brain fog, can anyone recommend some good books or websites to help older adults? I'm going to send her my copy of "Celiac Disease: A Guide to Living with Gluten Intolerance," but I know she could use some tools that are really easy to understand and follow. She's a smart woman... but she has some mixed-up ideas about what a "healthy" diet means (thanks to the low-fat craze). I wish I had time to go up there and cook for a few weeks! :(

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

Celiac.com Sponsor (A8-M):


rinne Apprentice
rinne
Posted

Good for you for figuring it out and helping your Mom. :)

This site? :)

curiousgeorge Rookie
curiousgeorge
Posted

oh that's GREAT! I'm pretty much sure my mother had it too but by the time I figured it out it was, alas, too late.

I hope she takes it to heart! It also gives you confirmation too!

caek-is-a-lie Explorer
caek-is-a-lie
Posted

Wow, your mom sounds like my mom, except her blood test was negative 10 years ago. Of course, it was just "below" a certain level, not necessarily zero. They never told us if we were actually at zero antibodies or not.

So she's 70 and I keep encouraging her to go gluten free anyway, but she won't, I suspect. It worries me because she will actually stop eating to stop feeling sick. If I lived closer, I'd just go over for a week and do all the cooking and make her see what a difference it makes. No more staying home for days because she can't leave the house with all the D she gets.

Oh well. :(

Kaycee Collaborator
Kaycee
Posted

Your mums sound so much like my mum.

She has been ill for years, mainly just with stomach issues, and I guess high blood pressure and high cholesterol. She went to the doctor just before Christmas thinking she had what I had, coeliac. But the doctor didn't run the tests, instead he blamed it on her gall bladder and the thing that got me was that the Doctor said coeliac is not hereditary. Well those were mums words.

So mum has been low fat, she still has stomach issues. She is up here, well in this area for a few weeks. I can't convince them to go further, as dad is a hurdle in himself to get past. He did say once, it would be too hard for mum to change to a gluten free diet, but yet she embraces a lower fat diet. Her reading of labels even at 77 has never been a problem. What do you do?

Cathy

rinne Apprentice
rinne
Posted
Wow, your mom sounds like my mom, except her blood test was negative 10 years ago. Of course, it was just "below" a certain level, not necessarily zero. They never told us if we were actually at zero antibodies or not.

So she's 70 and I keep encouraging her to go gluten free anyway, but she won't, I suspect. It worries me because she will actually stop eating to stop feeling sick. If I lived closer, I'd just go over for a week and do all the cooking and make her see what a difference it makes. No more staying home for days because she can't leave the house with all the D she gets.

Oh well. :(

And mine too. :(

nora-n Rookie
nora-n
Posted

My mom has the D too and I have told her to stop eating all that bread lots of times. She is blood type 0 and knows about that type of diet, and she should eat maninly eat vegetables and meat, she does know how to do that, and that is the way I cook, but she craves bread, and lots of it....I wish she would listen to other people.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.