Frustrated

[fylgja]

I am celiac. I tested positive multiple times on my blood tests and had one biopsy. I always got migraines, and skin problems, along with my stomach symptoms. My son started having migraines and vomiting last summer, but has had chronic constipation since he was a baby (and he's always been small for his age). He also suffers from gastritis and reflux, like me. He was blood tested positive, but negative biopsy. I took him off gluten anyway and all his symptoms disappear. The problem is getting other people to believe he can't eat gluten. They act like it's a phase I'm going through because I used to be a vegetarian. Once I couldn't eat gluten I started eating meat. I also have PCOS so I can't eat many carbs. I just want people to take us seriously! I even have cousins and their kids that were diagnosed with celiac. My sister can't eat gluten or she gets all over body pains. So I know we can't eat it, but it's not a big deal. There are so many foods without gluten, why does my mother have to give him fudge brownie icecream? Sorry for the vent, but I know you all are the only ones that understand.

[Cypressmyst]

I've often thought of dishing out a glutenous item in front of those who don't get it and before giving it to them taking out a quart of motor oil and dumping a bit in it and mixing it around and then handing it to them.

They of course wouldn't eat it, its poison.

Just like gluten.

I wonder if such a shock tactic would get through. I have a mega annoyance for people who don't even care to educate themselves on the matter.

Maybe you could do that with the next bowl of fudge ice cream you mom feeds him. Put the oil in it in front of her and then ask her if she would feed it to him now.

[salexander421]

LOL

[beebs]

My friend is celiac and her best friend never really believed in it. Kind of thought it was a bit in her head. Anyhow recently she glutened my celiac friend on accident. My friend got so ill, needless to say her best friend takes her very seriously now. It is very frustrating indeed. My mother is celiac and was soooo ill before being diagnosed - just wasted away in front of us all and we were all convinced she was dying of cancer. Anyhow she was diagnosed and went of gluten and a few years later she is looking so much better and has put on weight and her brother still doesn't believe in Celiac or any autoimmune disease. Thinks its all in her head

[kareng]

I am celiac. I tested positive multiple times on my blood tests and had one biopsy. I always got migraines, and skin problems, along with my stomach symptoms. My son started having migraines and vomiting last summer, but has had chronic constipation since he was a baby (and he's always been small for his age). He also suffers from gastritis and reflux, like me. He was blood tested positive, but negative biopsy. I took him off gluten anyway and all his symptoms disappear. The problem is getting other people to believe he can't eat gluten. They act like it's a phase I'm going through because I used to be a vegetarian. Once I couldn't eat gluten I started eating meat. I also have PCOS so I can't eat many carbs. I just want people to take us seriously! I even have cousins and their kids that were diagnosed with celiac. My sister can't eat gluten or she gets all over body pains. So I know we can't eat it, but it's not a big deal. There are so many foods without gluten, why does my mother have to give him fudge brownie icecream? Sorry for the vent, but I know you all are the only ones that understand.

I'm hoping your mother will not be in a position to feed him gluten again. Obviously, you can't leave him alone with her. For some grandmas, that might be enough to get her to behave.

[Cypressmyst]

My friend is celiac and her best friend never really believed in it. Kind of thought it was a bit in her head. Anyhow recently she glutened my celiac friend on accident. My friend got so ill, needless to say her best friend takes her very seriously now. It is very frustrating indeed. My mother is celiac and was soooo ill before being diagnosed - just wasted away in front of us all and we were all convinced she was dying of cancer. Anyhow she was diagnosed and went of gluten and a few years later she is looking so much better and has put on weight and her brother still doesn't believe in Celiac or any autoimmune disease. Thinks its all in her head

Seriously? What is wrong with people? I think the gluten has gone to their brains (In all seriousness) and made them crazy. :yes:

[salexander421]

I always send food with my girls and instruct their grandparents that they can only eat what I brought them. Me and my inlaws have a great relationship but I think they're afraid that if they feed them something they're not supposed to that we won't let them keep them anymore, which really they're pretty much right My parents understand it a little more so I don't really worry as much with them but I do still pack their food. Now that we recently had our oldest gene tested and she came back positive for DQ2 our families have been taking it a little more seriously. I think they're all realizing they could have it too.

Seriously, I would kindly tell your mother that you love her and want her to be involved with your son's life but if you can't trust her to not feed him stuff he can't have then she'll only be able to have supervised visits. It's our job as parents to protect our children and sometimes that involves protecting them from even close family members. I hope everyone starts understanding, I know that's hard

[fylgja]

Yeah, well, I've talked to her. She understands, I think. I guess she never had to watch him sit on the toilet while puking into a bucket in his lap after eating something bad. The motor oil idea is funny. I know I can't protect him forever, but he's only 6! So, since he has known how to read since he was 2, I told him he is reading all the labels himself before eating. He's cool with that, and really is distrustful now of eating anything anyone but me gives him.

[sassiskull]

people don't get it. Its sad. Even those that do actually try still mess up. I personally love my "non doctor" family members that "inform" me that CC is not a problem and I should chill out and use their glutenated collander to drain my daughters pasta. Umm No thanks. I just take mental notes of those that argue with me on how to feed my girl and remind myself they are never to cook for her. My nephew has a severe peanut allergy so my SIL & I have our inside gossip on these family members, we always joke that its like me sending my daughter to her house with a jar of peanut butter and her sending my nephew with a loaf of white bread. Not that that would be funny but its peoples ignorance that is so annoying!

[fylgja]

My sister and I do the same outside gossip thing. So far her kids don't show symptoms of celiac, but she has it and sees how my mom treats us different from time to time too. If mom bakes a cake she will say my sister CAN'T have it and I WON'T eat it. I don't get why she does this, especially seeing I have been through all the biopsys and blood tests (which she was with me when I got my first results). You would think that of all people she would understand. My mom is also the type that loves drama, and probably has something mentally wrong. I don't say that to be mean to her, I love her, but I'm in my 30's now and have suspected she has a screw lose since I was about 12. You all are so right: If he stays with anyone at all I will always pack ALL of his food. Ugh. There's so many gluten free options now, there's no excuse.

[frieze]

My sister and I do the same outside gossip thing. So far her kids don't show symptoms of celiac, but she has it and sees how my mom treats us different from time to time too. If mom bakes a cake she will say my sister CAN'T have it and I WON'T eat it. I don't get why she does this, especially seeing I have been through all the biopsys and blood tests (which she was with me when I got my first results). You would think that of all people she would understand. My mom is also the type that loves drama, and probably has something mentally wrong. I don't say that to be mean to her, I love her, but I'm in my 30's now and have suspected she has a screw lose since I was about 12. You all are so right: If he stays with anyone at all I will always pack ALL of his food. Ugh. There's so many gluten free options now, there's no excuse.

?untreated celiac?