My mother

[Gemini]

Here is a situation that most of you can identify with and it's going to take a lot of patience on my part in order to not go postal on the AMA.......

I was diagnosed with Celiac 13 years ago this Easter (it was the hot cross buns that, ultimately, did me in) and when I was diagnosed, I immediately thought of all my family members who have GI problems.  I knew that some of them would eventually be diagnosed also and some of them have.  There are many more who live in denial still and one of them is my mother.  She has many of the symptoms we all know and hate.....bloating, acid reflux, osteoporosis, chronic constipation which can sometimes turn into diarrhea when she is stressed and the ever popular dental problems.  She will turn 86 this year.

After her husband died in 2011 and then when we lost my brother in 2015, her symptoms got worse.  I'm sure you are all shocked by that.    Her weight has always been stable at around 130 pounds and she is now 5' 3".  She has lost a couple of inches over the years due to the osteo and aging thing.  Well, since about 2015, she has been slowly losing weight. It dumped down to 118 over 2 years and, even though we prodded her PCP, that didn't seem to ring any alarms with him.  Typical attitude.    Now we have this.......her weight was 118 last November (2017) and at her doctor's office on Tuesday, she weighed in at 109 lbs!  She has lost almost 10% of her body weight in 3 months.  I think we NOW have her PCP's attention!  So, now we have the added fun of trying to find a GI doctor, which my mother now agrees to see because she is worried she is going to die.  She is skin and bones and is mad at her friends because they think she has anorexia.  There is a doctor in her area (rural America with less than thrilling doctor options) who is Harvard trained (not always a guarantee of a good doctor) and worked at one of the leading Celiac centers in New England.  I think he might be out best bet.

BTW....her doctor did do a Celiac panel, without the DGP although he did the AGA screen, in 2015 and everything was negative.  It has been hard for people to believe me when I tell them that a negative blood screen does not rule the disease out.  He repeated her blood work on Tuesday, at my insistence via my sister because she lives near Mom and takes her to appointments.  We are awaiting results. I told my sister to get a GI appointment ASAP and tell them we are only focusing on Celiac right now.  She cannot wait long because at 85, her weight is too low and she is still losing. I just want her to get in and have an Endo done because if it is Celiac, she needs to go gluten-free immediately and hope it isn't too late to turn this around.  My mother is now being compliant about the GI and a Nutritionist because she is really scared, which is good because she is now paying attention and doesn't want to die.  Oh, yeah...I was gene tested and have a double DQ-2 gene, which means yes, Virginia, it's on my mother's side also.

Thank you all for "listening" as there are no other people on Earth, anywhere, who understands all this as well as you all and I do.  People here understand how stupid doctors can be at times and how tricky a Celiac diagnosis can actually be.  It's too bad my mother chose denial for 13 years and only now that her weight is so low, she is paying attention.  She is presenting almost identical to me.  The only thing I worry about is that she might have a Celiac associated malignancy due to having docs symptom treat her for years and her advanced age.  The other frustrating thing is her memory is getting really bad and we all know what that can be from but everyone else is acting like she has dementia.  Yeah...Celiac induced dementia!    The last comment I will make is how damn frustrating it is to see that not much has changed with doctors in the 13 years I have been diagnosed.  They just do not believe that elderly people could have it.  Well, you know what?  She wasn't elderly when the symptoms started all those years ago!  She has had GI issues for most of her adult life, starting in her late 30's. 

I'll keep you posted......

[Ennis-TX]

I think I was adopted by my current mother for a reason, she has shown many symptoms over the years that point to celiac. I keep prodding her to get tested, she has the ostreo, vitamin D deficiency, anemia,  she had a hyper active thyroid that hte doctors "Nuked" with radiation and killed it. I was adopted because she could not have kids, her immune system would attack the embryos. She has this constant plumb lump on her lower gut...alwasy has since I was a kid really odd proportionate, she always has gas, bloating, and acid reflux, and for the past year she has been dealing with D 2-3 times a week. Recently her knees have one out on her and she is looking at improving her health, retiring, and getting knee surgery and at my constant insistence will be getting the blood test done next month.

[Gemini]

Well, good luck Ennis!  It isn’t easy getting them to that point where they will be tested but if they want their health back, you only have one choice.  It would be easy for her to eat gluten free as she would have her own instructor!  

[cyclinglady]

Gemini,

I am so sorry that your mother is ill.  I can completely understand your frustration.  Please keep us posted.

 

 

[squirmingitch]

Better late than never Gem? Nahhhhh, it needed to be a long time ago but we also know it wasn't for lack of you trying. So again, we're back to better late than never. Let us know how it goes please.

Ennis, I hope your mom makes a turn around too. Good that you kept on her & she's going to get tested.

[cristiana]

Hi Gemini

I do sympathise - a very close relative in my family has dementia, osteoporosis, is losing weight, etc etc and as a close relative should have been tested for coeliac at my DX.  I told her at my DX to ask the doctor to be tested.  As far as I know nothing was done as there were no obvious gastro symptoms.  It is so frustrating!

I really hope that the endoscopy can be done soon.  My gastroenterologist diagnosed someone in their late nineties, I remember him telling me at my diagnosis, so clearly it is never too old.

I will be thinking of you both.

(BTW, a friend's father was quite ill at one stage and required an operation, but the doctors thought he was too weak for surgery.  So she encouraged him to drink Complan - not sure if you have it in the USA - and he did get a lot stronger through drinking it.  He is now completely well because he had the op)

Cristiana

 

[icelandgirl]

Aww Gemini.  That's so hard.  (((Hugs)))

When I was diagnosed I told my mom she needed to get tested.  I sent her with a list of all the tests, but the Dr refused since she was not having diarrhea.  When she switched Dr's I encouraged her to pursue it again and sent her with a list of tests.  He said he'd test her.  Instead of ordering the panel her ordered Total IgA, Total IgE and Total IgG.  Seriously!

2 years in she finally had the full panel which was negative and she's satisfied with that.

I hear your frustration and really hope your mom gets the answers she needs.

[PTArt]

I feel for you. My mom had diarrhea, immensely swollen joints, headaches, etc...lost 100 lbs towards the end of her life. She died at 81 after years of suffering, no diagnosis. I have celiac as well as my 2daughters, and we know she had it too. So much suffering for a slice of bread.

[Gemini]

40 minutes ago, PTArt said:

I feel for you. My mom had diarrhea, immensely swollen joints, headaches, etc...lost 100 lbs towards the end of her life. She died at 81 after years of suffering, no diagnosis. I have celiac as well as my 2daughters, and we know she had it too. So much suffering for a slice of bread.

This line pretty much says it all!  I am going to use this in future on those who need to hear it.

Thank you, everyone, for all the understanding I get from no one else.  Only a Celiac knows how hard it is to be taken seriously.  I am waiting for my sister to call and let me know when Mom can get into the GI doctor.  I told her not to let them put it off for too long. If she gets much thinner, she may not recover.  Kind of hard for the elderly to gain weight......

[C. Schnabl]

My Mother wasn't diagnosed till 70 years old. As a kid I remember my mom getting all her teeth pulled so she could get dentures. She told me later in life that the enamel would just flake off. In her later years she always had diarrhea or some stomach discomfort , started losing weight. Dr's did several colonoscopies couldn't figure out what was wrong. She also had several mini strokes and would fall and hurt herself. My Brother finally took her to OU Medical Center where they diagnosed her with Celiac  , explained a lot . My Mother refused to follow the diet , always said she eats what she wants. She died last year weighing  52 pounds. She was 5' 2" tall . The doctors said she died from COPD , I just don't believe that was all. Her breathing wasn't that bad. I was tested for it after her diagnosis due to the fact it is inherited and I have had stomach issues all my life. My first Dr. tested and was inconclusive. Said for me to go off gluten for a month then go back on and see what happens. That was 4 years ago . I have recently seen a  new gastroenterologist , told him my experience and he said he was going to do a blood test that will leave no question , no more guessing. Result was positive. He also told me it seems to come from Irish background somewhere in the family history. He suggested my siblings and my kids be tested.

 

[Gemini]

I am so sorry this happened to your mother!  That is horrible.  This is what I am afraid of.......my mother will not get a proper diagnosis and she will only believe the guys in the white coats.  If she is diagnosed, then having her go gluten free might not be too hard.  My sister is gluten free, without a diagnosis because her symptoms were in your face like mine were, and she lives near by.  My mother also agreed to go to a nutritionist, which shocked the hell out of me. 

My mother has breathing problems also...shortness of breath.  Of course, they have her diagnosed with some BS "restrictive airway syndrome".  She never smoked but needs to use an inhaler.  I think her breathing issues are gluten related.  Still waiting for the damn referral.......