Another Vent! I Could Be Unhappy?

[hungryforlife]

I know I am new here and mostly lurking in the background until I get a confirmed diagnosis but I have a vent and know that you guys would understand.

So a few weeks ago, after my gastro appointment I was at my mother in laws and she asked if I could be depressed, (as in that was what was causing my symptoms) I said no, I had been depressed before and this is different. I am frustated. Frustrated for not feeling well and frustrated for having to defend that.

Yesterday, she stopped by and my son (4) and I were doing quiet time and tickle cuddle on the couch. He continued to rough house as I was trying to talk with her and I repeatedly (three times) asked him to stop while I talked with her. He would not stop so I sent him to his room. (A discipline that we use to calm him down - nothing new) When he went to his room she asked me if I was happy? I said yes I am happy and left it at that. Then her daughter, (my husband's sister) sent me the March 20 article from the Wall Street Journal about the man who was diagnosed with celiac disease by his gastro, then had the diagnosis retracted by Stanford doctors. He stated he felt better after going gluten free, by the way, but did not have either gene? I took it as a suggestion, that even though I get a diagnosis, I may not actually have celiacs? BTW, Her son has celiac's? But I do not think he is strictly gluten free?

Last week I was at my sisters and she said she wondered if my problems were not because I didn't like going to restaurants. Since I became dizzy and nauseated both time we went. Not to mention that the first night I was there she served pannini's and cream of soup. The second day we went to panera's.

Why? WHY Is it so much easier for family to ridicule you and be so callous about your health, but will not hesitate to ditch your mental health? So, they would rather me be a crazy hypocondriac then gluten intolerant?

I am having both a colonoscopy and an endoscopy done tomorrow - hence all the vocal traffic in my family about the issue. I was hoping that they would be supportive and comforting about the whole thing you know, like I might be a bit apprehensive about the procedures. No doubt something has gone wrong with my body, but appearantly it is my head. I am just so angry about this whole thing!

Thanks for letting me vent!

[Guest nini]

Before my dx I struggled with depression for a very long time... I had to put up with my family calling me a hypochondriac and constantly asking me if I'd been to my therapist recently or if I was still taking my meds... I know how frustrating this is.

After my dx (and I ONLY had the bloodwork and positive dietary response) my depression completely went away. I def. think there is a link.

I've read many things about the supposed genes for celiac and I can tell you that they have not identified ALL the genes associated with it, so if they say someone does not have the genes therefore they can't have celiac, that is a load of bunk. If you have positive bloodwork you have Celiac, if you have a biopsy and that is positive you ABSOLUTELY have Celiac, but if you don't have the genes that does NOT negate the bloodwork or the biopsy. If the bloodwork or biopsy is negative BUT you respond well to the diet and still don't have the genes, guess what, you can STILL have celiac.

[key]

First off, before i forget. My GI doctor specifically told me he didn't know what the gene test would tell me, because they haven't identified all the genes for celiac. He told me to not even have the testing done. Obviously there are some disagreements even among the medical community about the specifics of Celiac disease. My blood work came back borderline and I was already gluten free for two months. I felt better and didn't care about having a biopsy, because i didn't want to start eating gluten again for it. ANyway, it doesn't really matter what they think. I have had to deal with this with my family. Even a year later if I tell my mom I am depressed after accidentally consuming gluten, she will 100% of the time blame it on something other then gluten!! Drives me crazy! My husband see's the connection though and is VERY supportive. The statement you made about them thinking you were depressed and that it was all in your head, well that is what my mom has said to me many times. I have to ignore it though. I know how sick I feel when I eat it and I refuse to be that sick for anyone. Many of us have dealt with family members being unsupportive.

Basically I think it is several things that make them not want to accept this disease for us. They have to worry about food for us when we visit. They want to be able to go to whatever restaurant they want to eat at without worrying about whether we can eat anything. For me I had issues with not eating well for a long time and so she thinks I am trying to get out of eating. I eat tons of food all the time. I have had certain family members tell me I don't look sick or how could I have lived 30 years and not know I had celiac.

I hope you find the answers you need. Like someone on here said once, you have to be matter of fact about your disease and confident. Don't for a second allow them to second guess you or play into their hands. I think confidence and knowledge go a long way.

It will hopefully get better with time. My 2 year old son also has celiac disease. There are alot of great people here, so ask all the questions you need to.

Hugs,

Monica

[nettiebeads]

Welcome to the forum and feel free to vent anytime. This is a disease that most people just don't "get" and even drs don't understand it, so how can regular lay people? It's hard to believe that a disease that can be so debilitating can be treated so effectively by diet alone. Everyone is so used to taking meds for this or that. If you had diabetes, would they react the same way? I suspect not. If they don't understand it, then YOU must be making it up.

I agree with nini in that drs have not identified all of the genes. Remember, we are a complicated organism. If you feel better on the diet, then stay on the diet. It's only your body and your health, not anybody elses. And be glad you have a very supportive DH; having one person in your corner helps a lot, I know.

Annette

[Carriefaith]

Our world revolves around wheat and I think people have a hard time understanding that wheat can do harm to someone. I mean wheat is the staple of our diets! How could it be bad!? ... Some people just don't understand and they probably never will. Many people need to experience the situation themselves until they will understand. If you decide to eat 100% gluten free, my advice would be to stick to the diet, eventually you will get better, and you'll prove to them that the diet helped.

[plantime]

With all of the fad diets and the excuses made up for going on them, people do not understand the very real need for a "strict" diet. Also, it is becoming more and more socially acceptable to have a mental disorder. Having a mental disorder means something is beyond control, and therefore removes the accountability factor. How sad that your family prefers the mental excuse over the valid diet control. Relax, get your tests done, and don't fret about your family. It could also be that since celiac is genetic, they are afraid they might have it, and so are in denial about you having it!