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Arghh....my Fiance And His Mother The Nurse
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How do I get my fiance and his mother (who is a nurse) to take his symptoms seriously? On one side of his family, an uncle died of type one diabetes complications and the foulness of the man's gas is still joked about. The other side of the family has issues with Down's, fibromyalsia, IBS, and epilepsy.

My fiance has had digestive issues for at least the six years I have known him. Every time he goes and drinks beer with the boys, or eats too many starchy foods, he has diarrhea for days. After spending a day with his extended family for Christmas (and eating almost nothing that wasn't glutened), he was in such bad shape that he missed several days of work and hardly left the bathroom. He's about three to four inches shorter than the next shortest man in his family (not that I care that he's short). Hair loss at 26, and the list goes on.

Christmas was my last straw, and started a day long google search. Within a few hours, I was sure he had celiac and I'm pretty sure he has DH. After discussing this, he agreed to go get tested this year. I have been cleaning the kitchen out over the last week (I'm afraid to shock him into the diet.....that is, afraid he'll rebel) and sent many of the no-no items to his sister's house.

Now for the bad part........We told Mom my suspicions and she shrugged and responded....."you probably do, but all you can do for that is go gluten free. Good luck, son." Sister thanks us for the groceries and brings over RITZ crackers as a prize for her brother, and my fiance took them and told me "I'll go gluten free, but I'm not giving up my RITZ crackers!"

HELP!!!!! How do I get him to understand how serious this is? He set up a drs appt for his first week of vacation....in April. I'm not leaving gluten in his diet that long. I do all the cooking, I do the grocery shopping, I pack the lunches. He doesn't have much of a choice at home and I have decided to go gluten-free as well this year for my own health issues. If I can't get him to go to the doctor sooner, should I just ask her to do genetic screening instead of a celiac panel? I need a medical professional on my side to help me out.

I picked his family practitioner last year because she's a direct, no-nonsense woman that believes in life changes over pill popping.....never knew then how much of a blessing that could be for me. But I'm afraid that with all the dietary changes that ARE being made, he won't show up positive when he tests - even if he does cheat like I know he will. I want to know for sure and I want the doc to put the fear of God in him.....I want quality of life.....and that doesn't come with days and days in the bathroom. I see possible celiac disease all over his family, and no-body seams to care.

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I really feel for you. You are in a tough spot. However if you take him gluten free or gluten light now you are insuring a negative test result and then it sounds like getting him to try the diet will be very tough. When he trys the diet he needs to do it strictly to see results. If he is not convinced he needs it you can't be with him 24/7 and police everything that goes into his mouth and even a stop at the donut shop or an occasional Ritz will keep him symptomatic. Do you both have the same doctor? If you do can you make an appointment with her and talk about your concerns and see if she will simply give him a lab slip to get the panel done? Maybe that way he can get the blood testing done sooner without having to take time off from work. Do not take him gluten light before his tests as you want the best chance of getting an accurate result. Celiac panels still have a high rate of false negatives but hopefully if he is having issues with gluten that won't happen with him.

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I just wanted to add that Kinnickinnick(sp?) gets rave reviews on their gluten-free ritz-style crackers.

If he's gonna be that adamant about Ritz, these could be diff betw 100%gluten-free & regular cheating.

It might even work better psychologically to have a couple wks ritz-free before the substitute - maybe a less recent remembrance of Ritz makes the trial more fair, instead of "this isn't exactly like Ritz". Maybe 1st thought is instead "hey these ARE good".

Best of luck.

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I realize you want him to be better (and it certainly sounds like he could have celiac), but he has to stay on gluten until his tests are done. If he doesn't, he'll have false negative bloodwork. He'll also likely need a endoscopy after the bloodwork, and he'll need to be on gluten for that.

As serious as celiac is, he's not going to fall over dead within the next few months from it. The best way to convince him to stay gluten-free is for a medical professional diagnose him and for him to see the results of the tests himself.

He's lucky that you care this much about him, but he is an adult, and adults tend to like to make their own decisions. You'll get a lot more cooperation out of him if he feels he's not being forced into anything (other than getting the testing done, which you should keep insisting on.)

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Thank you for all your support. He is lucky that I am as concerned and detail oriented as I am, but then again I am pretty lucky to have found such a wonderful man, too. He is not always this much of a pain. ;)

The only thing I am trying to force is the testing at this point, but I really can't force that either. And you are right, I can't force him to not eat gluten outside the house. It would be silly to try, but since he does none of the grocery shopping/cooking at home, he has little choice here. I guess if he wanted to be truly stubborn, he could go to the grocery store, buy those items and make them for himself at home.

I do like your idea about a cracker sabbatical before introducing the gluten-free versions. I had heard about the kinnikinnick crackers and had also found a few recipes to try out, but I think I will wait on those till he's been Ritz-free for a few weeks. Maybe I'll get lucky and he will be so excited for crackers that he'll go after the new version with gusto, instead of telling me everything about it that isn't as good as a Ritz. :)

I think he is dragging his feet on the doctor/diagnosis because he knows it will be a life changer if I am right and he thinks it's a possibility too. I do not currently use his doctor (she is not on my insurance), but I know her because both of my parents and my sister have used her for years. She had my sister tested for celiac two years ago (tests came back negative).

I really don't want to continue gluten at home right now for a few reasons 1) my fiance is frustrated with the symptoms and they are getting strong enough that he is missing work....but obviously still not strong enough for him to take off to go to the doctor 2) I think I could have an intolerance/celiac disease as well and in the week we have cut gluten out, I feel a marked difference with many of my own issues 3) although I do like this dr, I really am a bit jaded towards western medicine and don't want to go through 11 yrs of bs to find out I was right.

Since he is at least partially listening, but still dragging his heals, I was wondering if my plan B was a viable option.....ask the doctor to order the genetic tests INSTEAD of the celiac panel and endo. Could positive results to a gluten free diet and genetic markers be enough to have a pretty firm diagnosis? I want enough of a diagnosis to get the doctor to have a little come to Jesus talk with my fiance, get his mother to realize that this is "for real, and not just a weird health kick of mine" and maybe even get a referral to a dietitian/or a cooking class out of his AMAZING insurance plan (like my Dad got when he was diagnosed with type II diabetes on the same plan). Beyond that, I really could care less about a confirmed diagnosis.

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The genetic tests would certainly be interesting, but over 1/3 of the population has the genes that increase chances for celiac (24% for DQ2 and 10% for DQ8, according to wiki). Some doctors will give a diagnosis based off diet response. Is there anyway you can call his doctor and find out what she advises? Tell her you don't want to wait until April?

One thing to keep in mind is that once you go off gluten, the reactions tend to get worse and more severe to smaller amounts. Lessening the gluten in the diet might backfire that way. Your fiance might go from chronically feeling bad to severe episodes after gluten exposure.

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Since he is at least partially listening, but still dragging his heals, I was wondering if my plan B was a viable option.....ask the doctor to order the genetic tests INSTEAD of the celiac panel and endo. Could positive results to a gluten free diet and genetic markers be enough to have a pretty firm diagnosis?

Genetic testing is basically in it's infancy. We still have an awful lot to learn about celiac and the genes associated with it. There are many who carry the most common celiac associated genes and never develop celiac and there are people who are diagnosed celiac that don't have the most common two celiac associated genes. What happens if he is one of the people that have one of the less common genes and because he isn't DQ2 or DQ8 his doctor tells him he can never develop celiac? My blood and biopsy diagnosed DD had her diagnosis recinded by different doctors because she is not DQ2 or DQ8 and she is now back on gluten and attributing all symptoms to stress. Please take that into consideration. Would he be willing to try the diet strictly anyway even if the gene tests come back negative? If the answer is no I would personally skip the gene testing.

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
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