I Need Help...

[Guhlia]

Okay, my mom has been sick with IBS for as long as I can remember, but she recently has gotten REALLY sick. She has been diagnosed with IBS and diverticulitis (sp?) and is also on antidepressants for some stressful stuff going on at home. She also just had a colonoscopy that revealed a pre-cacerous pollyp (sp?) which they removed. She has now had the Celiac blood tests twice and both times they came up negative. Her GI told her that the new Celiac panels are much more reliable than the old Celiac panels. Whatever that means. Anyway, she tested negative on both the old and new tests. She's running out of money and can't afford Enterolab. I already asked her to try going gluten free, but she won't without a diagnosis. She's a very stubborn person. Anyway, perhaps you guys could lend some advice on what may be wrong with her. I'm open to anything and I'll pass all suggestions on to her. I know all her symptoms fit Celiac, but I thought perhaps you guys might be able to come up with something else as well since she's not very open to the Celiac idea after testing negative twice. Here are her symptoms:

Fatigue

Diarrhea/Constipation

Severe weight loss

Yellow skin tone (she is a chain smoker)

Anxiety

Bad balance

ADD-like symptoms

Horrible night vision (she does have cataracts)

Bad teeth (has them all capped)

Mood swings

Can't eat

Can't sleep

I'm sure there are other things going on that she hasn't discussed with me, but I really don't know. I'm really worried about her because she's always been such a strong person and now she's 95 lbs. and confined to her house. She hasn't even been out of her pajamas in 3 weeks. She's only 54 years old. I'm desperate for ideas. I'm really afraid we're going to lose her if we don't get some answers soon. She's just wasting away. Please, any suggestions would be greatly appreciated. If it helps, she just left my father for her high school sweetheart which may have caused the onset of the downward spiral. She had a nervous breakdown and is still recovering from that. Please help. Thanks in advance.

[CarlaB]

I'd buy the $99 test for her from Enterolab.

I'd also suggest reading Tired of Being Tired by Jesse Lynn Hanley, MD. I know I suggest this to very many people, but between the stress of life and the stress of this disease, I think that in the beginning her ideas would help pretty much everyone to heal faster. It's all about rest, reducing stress, eating right, exercising gently, etc. Sound's like your mom has had her share of stress lately.

Edit -- btw, I got to the point where I couldn't get out of bed and showered every other day because it took too much out of me.

[Lisa]

Are there any other concerns about your mother's behavior. She apparently has had some major changes in her life. Is she coping well with those changes? You sound like a wonderful daughter. Please look at all aspects of her situation. If not Celiac, perhaps an intolerance could be an issue. Offer your assistance at all times and alway make her know that you are there for her as I am sure you have.

I have not had a mother in so many years, so I am a little slack as to how to deal with the mom deal. I do hope you find a solution.

Lisa

[kendra]

No advice, just hope she gets better. I think my mom may be Celiac too, but she will not be tested. Hang in there. I'm praying for you both right now.

[Guhlia]

Thank you everyone. Carla, I think I will ask her if she would do the Enterolab test if I bought it for her. I will also ask her if she will follow through with the diet once she recieves the results. If she says yes, then I will buy it for her. If she says no, well, I guess my hands are tied on that one. I was also at the point, pre-diagnosis, where I couldn't get out of bed. My husband would carry my three month old into the bedroom so I could spend time with her. That is how I'm imagining my mother, though I haven't seen her in weeks. She has been avoiding me, I don't think she wants me to see her like this. Oh, and thanks for the suggestion on the book. Right now she can't see well enough to read. She says it gives her migraines. She really needs to have her cataracts removed, but she's just so stubborn.

Lisa, she was planning on speaking to her family doctor about possible allergies/intolerances. She has never even been tested for lactose intolerance, so it seems to me that they may be missing somthing there, even if it's not gluten. Apparently they haven't tested her for much of anything. She said they didn't even mention Chron's to her. Ugh... Doctors... Sometimes they really get to me. She said that they've been trying to treat the symptoms of IBS rather than determine a possible cause. Well, she didn't use those words, but that's pretty much what she said. At least they're starting to take her seriously about the ailments now that she's so frail and willing to go in for the more invasive procedures. Also, she's doing relatively well with her life changes now. It took some time, but she is recovering. She's a very strong woman. She's still on antidepressants at the coaxing of her GP. He wants to get her physical health under control before he eliminates any of the medications.

Kendra, thank you for the kind words. Perhaps your mother will soften and eventually get tested. Sometimes it just takes time for things like that to set in before you're willing to do something about it.

[queenofhearts]

Guhlia, my heart goes out to you-- it must be so hard to see your mom suffering so. I wish I had some real help for you. If your mom isn't willing to try the diet without a diagnosis, would an endoscopy be an option? I know they are expensive... but they might also show other problems, even if she isn't Celiac. My doctor did the endoscopy without a Celiac panel at all, because at the time there were other possible diagnoses. If you put it to her that they are looking to eliminate other problems... & then there are flattened villi & positive biopsies... well, you'd have your answer.

I certainly hope you can find a way to help her heal. The smoking worries me too, but I know how resistant smokers are to any suggestion that they cut back. I have heard that smoking can be a form of self-medication for undiagnosed Celiacs... you might mention that to her.

Hoping you both find some answers,

Leah

[aikiducky]

When they did the celiac blood tests, which tests did they run? Did they check that she isn't IgA deficient? If she is IgA deficient (it's more common in celiacs than other people, too!) she will never test positive in the blood, but has to be diagnosed by biopsy.

Could you kidnap her for a vacation to your house and only feed her gluten-free food for a couple weeks?

Sorry, I can't think of anything else that it could be, but I'm mostly just familiar with celiac so I'm biased....

Pauliina

[eKatherine]

  aikiducky said:

Could you kidnap her for a vacation to your house and only feed her gluten-free food for a couple weeks?

Pauliina

I think this is the best idea. She sounds like she's too weak to cook, can you shop for her and bring over homemade meals?

[Guest nini]

in this case I would insist on the endoscopy and biopsies, but make sure her dr.s take multiple samples... At least 6-8... and after that if they still say she's negative for Celiac, push for a "non celiac gluten intolerance dx, based on dietary challenge" and if there is any way YOU can do the shopping and cooking for her during this time, she may be more willing to try it... Probably also lactose intolerant, but as with anything, it really could be something else, and her Dr.s need to keep looking... maybe you can go with her to her Dr. appointments and explain to them your experience and the genetics of it, and also the high rate of false negatives... if they don't want to listen to you, FORCE THEM TO!!!! LOL!!!! seriously, I'm sorry you are going through this with your mom, I'm sure it is really difficult to watch her waste away, but it def. sounds like it could be Celiac, esp. since they've been calling it IBS for years... that is one of the most common misdiagnoses of Celiac out there.

[mouse]

You really need to see your Mom and make sure that she is at least getting enough fluids. The last month before my diagnosis I would not let my family visit as I did not want anyone to see how bad I had become. The last 9 days I became dehydrated and then I was in terrible pain and in a fetal position. I hope she listens to you before she gets to that point. I would think that the weight loss is scaring her. But, I really don't understand her being so stubborn, unless she needs a diagnosis before she goes gluten-free. I don't know how old your Mother is, but I probably would not have gone gluten-free without a diagnosis. I would have thought that it was some fad diet. I hope she gets some diagnosis soon.