Sooo Frustrated!

[vanillazeis]

OK, i thought about putting this on a different board, but seeing as the only people that can relate are the "parents of kids or babies with celiac disease" here i am. Our 3 year old (7-23-04) is recently diagnosed with celiac (7-1-07). I asked her GI specialist about my husband and i getting tested, and his "theory" on the whole thing was- you both need a blood test, but if you have gi symptoms the blood test is not good enough, you also need an endoscopy. Well i have no GI symptoms at all, but through trial and error i have found that i can not get my insurance to pay for my blood test unless i have symptoms, so im going to wait a few months, come up with some symptoms, and get my test. My husbands test was covered, and he had it done last monday. He went to his appt. alone (my first mistake, as he knows nothing about celiac, other than not to feed our kiddo stuff i havent approved) and apparantly he told the dr. his symptoms, which include, diahrrea (pretty often), constipation, gas, belly aches, and blood in his stools (which my 3 yr old also has). Well apparantly this Dr. heard blood in the stools and completely ruled out celiac (he still did the blood test because my husband new better than to come home without doing it he told my husband an endoscopy was not needed but a colonoscopy is. That frustrates me, because he sends my husband home with a pamphlet about the importance of screening for cancers when there is a problem, and im sitting here thinking, arent cancers a long term affect of untreated celiac disease!? Why not investigate what the cause may be at the same time as trying to find the problem!! My husband has had symtoms of celiac his whole life, starting from when his mother introduced solid foods, and he became lactose intolerant, she always says he got better, but then eventually formed an intolerance to soy as well. He and his sisters all had potbellies as children, although they were skinny kids. My husband and one of his sisters are also diagnosed with ADHD. His celiac blood panel came back negative today. I'm worried that his sisters and parents might think that if he showed up negative, it must come from my side, and they wont get tested. Am i overreacting? Should i drop it and give this dr. the benefit of the doubt? Should i insist they do the endoscopy when they do the colonoscopy? Should i make him switch dr's, does he sound like he might be one of those dr's that know nothing about celiac disease? Thanks guys!

[ptkds]

IMO, you should probably insist that they do the endoscopy during the colonoscopy. About 6 yrs ago, I had a colonoscopy done, and they found pre-cancerous polyps in my colon. So the colonoscopy is a good idea. They won't have to do much to just do the endosccopy done.

He can also try the diet and see how he feels from that.

As for the family, don't bother. I have 2 aunts that most likely have Celiac, but they refuse to even be tested because they don't want to eat a gluten-free diet. One of them is suffering from severe diverticulosis, but she won't bother getting tested. It's frustrating, but it is their life.

ptkds

[vanillazeis]

IMO, you should probably insist that they do the endoscopy during the colonoscopy. About 6 yrs ago, I had a colonoscopy done, and they found pre-cancerous polyps in my colon. So the colonoscopy is a good idea. They won't have to do much to just do the endosccopy done.

He can also try the diet and see how he feels from that.

As for the family, don't bother. I have 2 aunts that most likely have Celiac, but they refuse to even be tested because they don't want to eat a gluten-free diet. One of them is suffering from severe diverticulosis, but she won't bother getting tested. It's frustrating, but it is their life.

ptkds

Thanks for your help! My husband is a little stubborn, but i think he might agree to go gluten-free atleast for a few months as a trial. Both of my husbands parents have dirverticulitis, but they are both getting tested, so yay for that! I just dont know whether to put my husbands sisters through getting tested, when it's only their niece that has been diagnosed. opinions?

[kbtoyssni]

It is frustrating that the doc insisted it's not celiac, but I'd agree that a endoscopy isn't a bad idea. What's the age you're supposed to start getting those anyway? Since it seems suspicious that your husband has it, I don't see a problem with his sisters getting tested. Maybe they don't have it and they go on with their lives. Maybe they do and you can save them years of misery.

[vanillazeis]

It is frustrating that the doc insisted it's not celiac, but I'd agree that a endoscopy isn't a bad idea. What's the age you're supposed to start getting those anyway? Since it seems suspicious that your husband has it, I don't see a problem with his sisters getting tested. Maybe they don't have it and they go on with their lives. Maybe they do and you can save them years of misery.

thanks for the advice! The age to start getting a colonoscopy is 50. I think that's what you meant, i dont think there is an age to get an endoscopy. My husband is only 26, but i do agree that the colonoscopy is not a bad idea. i guess the problem is that i feel a little insuperior to waltz in and demand that my husbands dr (who happens to be the head of this practice) perform an endoscopy as well. I guess at some point im going to have to start being a little more confrontational, im just not that way by nature. I'm getting better now that my little girl has been diagnosed with celiac and started school. I have to be kinda loud to get her taken care of properly thanks!

[Nikki'smom]

I agree a colonoscopy is a good idea especailly if there is blood in the stool. My DH had Ulcerative Colitis (colon removed) starting in his early 20's. Now that our DD has been diagnosed with Celiac he wishes he knew about it back then because he thinks he should have tried being gluten-free before he had his colon removed. So personally I say go for the colonoscopy and then see what they find (hopefully nothing serious) and if need be then be pushy on the endoscopy. If you can get them to do both at the same time even better.

As for his sisters keep mentioning it but in the end if they don't want to help them selves then their is nothing you can do.

I know what you mean about feeling like it was a mistake not going with DH to the dr. That is how I used to feel if I didn't go to the gastro with DH. It actually got to the point the gastro would ask me the question about what was really going on not DH! LOL

Good luck!