A vent about my mother

[Cat-a-Tonic]

This is so frustrating. My mother has this cousin who she lost touch with for awhile and reconnected with a few years ago. The cousin and her children all have celiac disease, as did her father. The cousin's father's brother, my grandfather, didn't have celiac disease as far as we know and there's no documented celiac disease in my direct family line.

I say not documented because of what happened next. When I started having my IBD-like symptoms in Oct 2009, my mom mentioned it to her cousin and the cousin said it could be celiac. My mom said no, because it's genetic so everybody else in the immediate family would have it too. Then she started thinking - her father, my grandfather, died of colon cancer and all through his life he apparently popped antacids like they were candy. So now my mother thinks that her father did have celiac after all (even though nothing but colon cancer was ever diagnosed) and that if he had it and I'm sick, then she must have it too and so do I. (Since he was never diagnosed, he may have just as easily had an undiagnosed IBD, but nobody else in my family seems willing to accept that possibility.)

Now, I've been tested and tested and am still undiagnosed, but I've had the celiac blood test as well as upper endoscopy with biopsies, which I understand is the "gold standard" for diagnosing celiac. My doctors assured me that normal biopsies and a normal blood test conclusively rule out celiac as being the cause of my digestive troubles, so it's confirmed I do NOT have celiac. Additionally, bread and pasta are some of my safe foods. In a flare, if I can eat at all, I can eat things like mac & cheese (with the fake powder cheese, not real cheese) and buttered noodles and those things do not aggravate or prolong my symptoms, and they make me feel better. I am personally 100% sure I do not have celiac nor a gluten sensitivity.

In spite of this, my mother and my aunt and a couple of my cousins are now sure that they have celiac, even though none of them except one cousin had any symptoms, and the cousin who did have symptoms still has symptoms like LRQ abdominal pain! So going gluten-free didn't "cure" her! None of them have ever had one single diagnostic test!! And they have all been harping on me to go gluten-free as they are convinced it'll totally cure me. My mother has been the worst. I've told her in the past that I do not have celiac, my doctors have confirmed this and my GI suspects Crohn's or microscopic colitis, and I consider the subject matter of gluten & celiac to be closed. For awhile I didn't hear anything about gluten. But last night she sent me an email informing me of a family get-together, and then in the last paragraph of her message she told me again that I should go gluten-free! She is driving me crazy!

Is it so much to just ask for some support and understanding from my own mother, instead of her trying to push this diet on me? I know my body, I know that gluten isn't affecting me, I know my trigger foods and none of them are gluten or wheat, I know I don't have celiac, and furthermore I respond to pred and Entocort so I feel pretty confident in saying that I probably have an IBD! She just doesn't listen and all she wants is for me to go gluten-free.

So, what do I do? Do I go gluten-free to shut her up? Or do I stand my ground because I know it most likely won't do anything except limit my diet to being mainly Ensure and bananas? My diet is limited enough as it is and I'm doing fairly well right now and I don't think someone who hasn't been through any testing whatsoever has the right to self-diagnose, let alone tell me what to do with my body, even if she is my mother! Ugh!

Sorry this was so long, thanks for listening to me vent. I know you guys will understand.

 

[ameslouise]

Oh, Cat, that is a shame that your mother can't hear you and accept that you have medically and diagnostically ruled out Celiac! Do you have the test results showing that the Celiac test was negative? Can you get a copy and stick it under her nose?

I am sure her intentions are good and she's really just hoping for a quick fix to all of your troubles.

Food issues can be so divisive when it comes to family functions. Everyone thinks they know what's best for eveyrone else and can't seem to just mind their own business!

Good luck with your Mom. I hope this doesn't become a wedge in your relationship.

- Amy

 

[chrisnsteph1022]

As a mom, she probably just wants to make you better and in her mind, you have celiacs and you're not doing anything to help yourself. Obviously, that's not the case, but maybe she's just hoping that's all it is so you can get better by making a dietary change. I would definitely not go into a gluten-free diet just to appease her, though. I'm like you-in a flare, I live on breads and pastas. Do what you know works for you and just smile and nod when she starts in.

 

[AndiGirl]

We are here for you, Cat. Oh mothers! I wish I had a link, but I did recently read something online about a similar gene causing Crohns Disease and Celiacs Disease to run in the same family. Like you, I was also tested for Celiacs Disease which also returned as a negative. There are several known cases of Crohn's Disease in our family, but nobody that we know of has Celiacs. My mom is acting in a similar fashion as your mother, only the opposite. One of my nieces is having stomach problems. She is automatically assuming she has Crohn's Disease as well. My baby is going to be a year-old and she's so worried about her developing CD. For my mother suddenly everyone who has digestive issues has CD. Okay, I may be exaggerating some, but it seems that way.

 

[effdee]

If you've told her that you tested negatively for Celiac and know that foods with gluten in them don't bother you, ask her why she thinks you have Celiac (does she really doubt scientific, diagnostic tests for it?). If she can't provide good reasoning (science or logic), then there's no point in continuing the discussion! If she can't listen to you, comprehend what you're saying, and process the information, and form a coherent, reasonable response, it'd be like talking to a brick wall. If she doesn't shut up about it after that, I'd try ignoring her every time she brought it up.

People who have baseless convictions really get on my nerves! I'd be interested in hearing when/if she gives up on it, if you don't mind sharing.

 

[David in Seattle]

People who have baseless convictions really get on my nerves!.

Yeah, most of the species, unfortunately!

Cat - You mentioned your GI suspects that microscopic colitis may be a possibility. Have you had a colonoscopy with multiple biopsies to rule this out?

 

[Cat-a-Tonic]

Thanks everybody, I knew you'd understand! You guys are the best!

David, yes, I had a colonoscopy last April and my GI took a bunch of biopsies (so many that I was in quite a bit of pain the following day). They all came back normal, as have all of my test results. I believe that both Crohn's and microscopic colitis can have "skip" patterns, so if I do have CD or MC I'm guessing the biopsies just missed hitting the right areas.

Amy, I don't have a physical copy of my test results, but I'm sure I can get one from my doctor saying that I definitely don't have celiac. Maybe I'll frame it and give it to my mom for mother's day (just kidding!).

Effdee, you're right, it is kind of like talking to a brick wall (or at least it makes me feel like banging my head against one!). I've already explained things to her multiple times but she still harps on me about it. You're right, I should just shut her down and ignore her whenever she rants about gluten.

The hard part is, my parents have decided to take me on vacation at the end of this month, so I have to spend a full week with them. (I'm going to my doctor on Monday to ask about pain meds for my hip, and I think I'm also going to ask for some anti-anxiety meds so I can deal with my parents without the stress killing my guts!)

 

[effdee]

Maybe you can tell your parents how they're causing you anxiety (which is detrimental physically, mentally, and emotionally) and would prefer them to stop than to lead you to taking medication for it. It would make the vacation more enjoyable for everyone, too! Worth a shot.

 

[Cat-a-Tonic]

That's an idea - but my parents are quite stubborn (as am I) so I doubt it would do much to change their overall behavior, even if I told them very honestly how it affects me (describing my gut cramps and diarrhea and so forth). My mother is a champion nagger and my dad is stubborn as a mule, not a good combination for me to have to deal with. But I'll give it a try. I'm still going to ask my doc for anti-anxiety meds anyway, as I feel I'll probably need them. Maybe if my mom sees me popping Xanax it'll shut her up at least for the duration of the trip.

 

[ameslouise]

Pop the Xanax and tell her it's an experimental new Celiac drug that allows you to eat gluten products!!!

Have fun on vacay - goin' anywhere good?

- Amy

 

[Cat-a-Tonic]

Ha ha, I can just see it - "Mother, this is my gluten digestive enzyme pill. It's called... um, 'Celiax', yeah, that's the ticket. They only prescribe them to people who have had biopsies and the blood test though, so sorry, you can't have any!" Ha ha!

Yeah, we're flying into Las Vegas (not staying there though, I hate Vegas) and then driving to my aunt's house in NW Arizona, and after a couple of days visiting her we're driving over to the Grand Canyon for a few days. My hip has been giving me troubles lately so I'm hoping it (and my guts) behaves so that I can do a bit of hiking. I went to the Grand Canyon when I was about 14, but of course I was a bored and snotty teenager then and didn't really appreciate it. I'm looking forward to seeing it through the eyes of an adult.

 

[ameslouise]

Have fun! Hope you are well during your trip.

And good luck with the Celiax - hope it does the trick!

 

[MADiMarc]

Dear Cat,
I was reading your post & thinking if I had a nickel for every time someone said to me, "Oh, I have a friend who cured her Crohn's with this diet/herb/supplement" i would be a blooming millionaire.
I agree with the others though, don't change what you know works for you just to quiet your mom down. It is so hard to be an adult child. My mom is visiting & it seems she talks at me instead of to me, like I am still 10 years old.
Good luck & enjoy your vacation! Take the Xanax though!
Michele

 

[whysoserious]

Maybe you could fib and tell her you're trying it? It might get her off your back at the very least, since she's not listening to you.

 

[Crohn's Mom]

Cat I'm a mom...I drive my daughter NUTS sometimes about food...I know I do. I don't mean to though. She was tested for allergies years ago because she was breaking out in hives every single day, with no known reasons, for months on end. The results of the testing showed that she had quite a few "allergies" to foods. Corn was the big one, then a few smaller allergies to broccoli, peanuts, coffee, lobster, and pork. It was the corn that the doctor was concerned with tho. So off we went and began a strict "corn free" diet.
I'm not sure how many people realize how hard that is to do...if the food is packaged, you can almost bet it has corn in it!
Gab lived on that diet for about a year straight and the hives did come to a halt. She slowly started introducing corn back in to her diet and did very well...only a few hives here and there, but that only happened when she would eat foods like Doritos or corn itself.
As of right now she will eat anything she wants. She doesn't care any more if it has corn, as she believes she has "out grown" this allergy.
Well, me being that annoying nagging and oh so loving and caring mother, (with a great amount of anxiety because of her disease) I have tried over and over to convince her to go back on a corn free diet again. She thinks I am nuts and the corn has absolutely nothing to do with her Crohn's symptoms. I beg to differ. I believe that just because the corn no longer gives her visible hives, that doesn't mean that it is not silently contributing to, and causing havoc, on her intestinal system.

I have learned however to shut my mouth for the most part and let her find her own way. It is one the the most terrifying things a mother does...letting go. I just want to "fix" everything for her. I want to put that little bib around her again and spoon feed her every little drop. I know I can't. She has began the process of becoming and adult and standing on her own two feet.

I tell you all this because I am just hoping that maybe, just maybe, in some little way this is what your mom is doing as well. We feel so helpless watching our babies go through something that we have no control over. Maybe your mom is just trying to help you (even if she's dead wrong). I mean, she's even doing the gluten free diet herself to prove to you how right she is!
I know it's hard .. and I know we drive our children's crazy. I also know that I would lay down my life for my kids and take every single pain they have ever had away if I could and keep them all for myself.

I hope I haven't offended you by stating this, or make you think that I am trying to lesson how you feel .. I do mean well Feel free to ignore it all haha.