I Need Some Advice...

[Guhlia]

I was diagnosed with Celiac two years ago, shortly after my daughter was born. Does this mean that one of my parents is a carrier or maybe has it? I'm not clear on the genetic trail of this disease (if there is one). My mom was tested once and it came back negative. She suffers from IBS, but her symptoms are relatively mild and I believe that she could possibly have IBS rather than celiac. I've been bugging her to get tested again, but she hasn't yet.

I'm really worried more about my dad. My parents just recently seperated, so my dad's on his own for the first time in almost thirty years. He's 55 and not exactly the kind of person that I see doing well on his own, though only time will tell. I was hoping maybe some of you veteran celiacs could chime in with your opinions on the likelihood that his symptoms could be representative of celiac disease. I know that celiacs have such a wide array of symptoms that I'm having a hard time determining whether or not I should try to convince him to get tested. He's a very stubborn man. Anyway, he's very forgetful (doesn't have Alzheimers) - I'm thinking brain fog? He was diagnosed with sleep apnea a few years ago. He sleeps all the time, he's the only person I know who can fall asleep standing up, but he doesn't have narcolepsy (sp?). He doesn't have any bowel symptoms that I know of. He's generally pretty irritable, very bitter, and excessively angry. He's been like this as long as I can remember. I'm kind of thinking that this isn't a result of their marriage, rather their failed marriage is a result of his behavior. I guess that's beside the point though. He's had back surgery three times now (I don't know if this could tie in with celiac disease or not), it's from a herniated disk that they couldn't repair properly. He know has some electrical device surgically implanted in his back to relieve the pain. He's had cartilage problems in both knees that resulted in surgery. He's generally very unmotivated and pessimistic. He's really not a very fun person to be around, but I can't really say that he's depressed. It just seems to me like he's walking around in a haze all the time, but he's never put it in those words, so I really don't know. He doesn't like to talk about how he's feeling so it's hard to say what's going on. His cousin was diagnosed with celiac disease years ago. Is it possible that he could have celiac disease and that's what's causing all this?

My next question is, if this sounds like it could be celiac disease, what's the best way to ask a stubborn man to get tested? I'm so afraid that he's not going to make it on his own and we can't take him in if he fails miserably. I'm just trying to come up with answers BEFORE he runs into problems. He's still in the process of moving out, so he hasn't really been on his own yet. If anyone has any ideas or input, it would be greatly appreciated.

[jerseyangel]

Guhlia--Hi, I first want to say I'm sorry for the problems in your family. It must be so difficult for you to watch your parent separate. A couple of thoughts-- There is family history, his cousin and you. Also, the brain fog and depression (that's what it sounds like to me). Not every Celiac gets digestive troubles, and given your dad's disposition, he may not be one to talk about such things. Of course, without knowing him, it's hard to say. I do know that in my family, on my mom's side, there are several people with your dad's type of personality. I am the only diagnosed Celiac, but I really think my mom has it, and there are several other cases of autoimmune diseases in that family. My mom had a blood test a few months ago--the doctor (a GI) only did one test--not the whole panel, so she thinks she's negative. I told her that the test was not the whole panel, but she's sticking with the negative dx. If you deceide to suggest to him that he be tested, maybe print off some articles and show him parts of books like Dr. Green's book that would apply to him. That way, you'd have something "in print" to back up your opinions. Another thought I had was that Celiac symptoms can become worse during a time of stress. Keep an eye on him for that. I wish you and your parents the best

[tiffjake]

I just wanted to add that I really really really (get it!) think that this is genetic. I didn't even know that it (Celiac) was in my family until I was diagnosed, and then I was talking to my dad about his symptoms, and found out that my paternal grandmother died from complications of non-tropical sprue (another name for celiac disease). I am convinced. I have also had the gene testing done from EnteroLab and I have 2 of the genes. (On a side note, I dreampt (sp?) last night that I had a daughter, and I don't yet, that threw up after having regular cake....so maybe that is telling me I will pass it on to a daughter??!! weird.) I am also trying to get my dad to get tested, but he wont. He is stubborn. I understand your concern and frusteration. But my dad just got re-married (for the 3 time) and he feels great about life, so he dosen't want to mess that up with a disease. Anyway, good luck to you, and I agree with jerseyangel that if you have documentation to show him, that is more powerful than your words alone.

[Guest nini]

I agree that the best thing would be to show him a book or article or something that would specifically get his attention. Something that maybe addresses the mood aspects of this, the genetics of it, and the fact that since you have it, it's recommended that EVERY first degree relative of a dx'ed Celiac be screened for it...

Best of luck with it, that is not an easy situation to be in.

[Guhlia]

Thanks everyone for your support. I think I may try to talk to my dad this week. Cross your fingers for me, this isn't going to be easy. He's not exactly my best friend if you know what I mean.

Thanks again.

[Guhlia]

Thank you so much everyone for the support. I talked to my dad today and by the end of the conversation HE was coming up with possible Celiac symptoms that he's experienced. He's pretty unmotivated about doing anything normally, but he said he would get tested. I'll believe it when I see it.

What tests should he ask for? I don't think our doctor ever did all the testing that he was supposed to. I know my dad won't get the scope, but what blood tests should I have him ask for? I think if I get him all the information on it he'll be a lot more likely to pick up the phone and schedule an appointment.

[jerseyangel]

Guhlia--That is great that you got a dialogue going with him! Nini can give you the exact tests in the Celiac blood panel (I never had the blood work--only biopsy). Hey Nini--we need ya over here!!

[tiffjake]

Guhlia--That is great that you got a dialogue going with him! Nini can give you the exact tests in the Celiac blood panel (I never had the blood work--only biopsy). Hey Nini--we need ya over here!!

Well, didn't see a reply from NINI, so here is my suggestion for the blood panel:

IgA, IgG, TtG, total serum IgA-those are the ones that I know about, and the ones that I had.

[tammy]

Wow! I think it is so great that you had the conversation!!! I agree of starting with the blood panel. I trust that he is eating gluten especially when they do the blood test.

I think that Enterolab is a good non-invasive diagnostic tool. Perhaps he could consider some nutraceuticals for the support of his health until he is truly ready to fully address this problem.

GOOD LUCK TO YOU!

[ajay]

Guhlia, what's the latest with your Dad?

I have been thinking about this quite a bit lately... whrn I first checked out the boards here, I was sure I was just allegic to wheat. Now that I've been here for awhile, I'm not as certain, because lots of people seem to have the same sorts of symptoms... My sweetie is already convinced that I'm a celiac. The specifics don't matter much to me, since either way the answer is the same: don't eat wheat (or barley or rye...)!

Except that a recent conversation with my mom got me wondering. She was severely underweight growing up, then overweight after her mid 30's. She's had thyroid problems and all sorts of issues, but the main thing is that she takes tons of Immodium on a regular basis. This cannot be normal. I know celiac is genetic, so now I'm thinking maybe I should get tested just because if it comes back positive, It'll be easier for me to convince her to get tested. She has just recently tried cutting out wheat (meaning she's just eliminating the obvious stuff) and has lost some weight and reports having more energy. Which is good, but I wish she were strict about it, since I know she's still eating a fair amount of hidden gluten.

There is no way I'm going to eat gluten for a challenge test, but there seem to be other options.

Any thoughts on getting a parent to take gluten-free as seriously for herself as she does for me?

[Daxin]

I'm glad the conversation went well. I have had similar conversations w/ both my parental units, and my mother is adamant that her symptoms are NOT celiac. I add here that she has been diagnosed with Fibromyalgia, Arthritis and various other heart and GO symptoms for some time. Her MD recommended a gluten-free diet for something else, but she was eating spelt bread.

Anyway, I digress. I also think my brother may have it, but since we are not speaking, my mother will not relay my concerns.

I think all relatives need to be screened at the very least, and I am having my daughter tested as soon as possible.

Let us know what happens w/ your father.

[Guhlia]

Unfortunately my father has since decided that he doesn't have the time or money to get tested. He and my mom split up a while ago and he's facing a change in insurance and doesn't want to have yet another pre-existing condition. We aren't close, so I haven't bothered pushing the issue. I suggested doing the Enterolab tests, but he quickly shot me down. It's not worth getting yelled at over. I'm just happy that I'm gluten free and healthy.

Hopefully someday he'll wake up and smell the coffee, but until then I don't see that there's too much I can do short of buying the Enterolab test for him. I figure that if he's not convicted enough to save the money to buy the test, then he likely won't be convicted enough to stick to the diet. I suggested going gluten free for a few months as a test and he quickly shot that down and told me it would be impossible and horrible and how could I even suggest such a thing. Ugh... I hate to sound so negative, but I should've known this would happen.

Good luck to the rest of you with your families. I've read that it could be as good a chance as 1/20 for first relatives to have the disease. Testing is so important.