Help

[Suprmom]

It's been a long time since I've been on this board and before I was on here for my sons sake. He has Multiple food allergies and there has been some discussions of celiac disease but it really doesn't matter because he has "true" food allergy to all the gluten grains and a few other foods. The only way that we can prevent him from having reactions is to not have it in our house.

But I'm not on here for him today I'm on here for me. I have always had some moderate to severe GI issues but I am lactose intolerant and have always written my issues off as that but what I am dealing with now is different. We eat out on occasion and that is when my DH and I get to have what ever we want... usually full of gluten. With increasing frequency I have been getting "sick" afterwards. Now every time I eat out I have severe diarhea within a hour that lasts most the day and sometimes my GI tract feels like it's burning, not my stomach but lower. I have finally given in and will see the doctor this friday but having dealt with food allergies I know General practitioners can't know everything. I've read that most people with celiac disease have worst reactions to gluten once they start a gluten free diet, which I am mostly on by default. Does it sound like I might have celiac disease???

Any imput would help.

Thanks

[ravenwoodglass]

Yes it does sound like you are one of us. What you are doing is a gluten challenge whenever you go out to eat. And your body does not like it.

[GFinDC]

I had lactose intolerance for 10 years and thought that was my problem, although I knew there was something else too but wasn't aware of celiac. Lactaid just didn't seem to work anymore and I had reactions to even the tiny amounts of dairy in a slice of bread. Or the little bits of dairy in a few cookies. I took lots of lactaid but couldn't handle even those small amounts. Of course it turned out the dairy was just a side affect of the gluten problem. Stupid gluten! Stupid me I guess. But anyhow, lactose intolerance seems to be a problem for lots of us at least at the beginning of the diet. You can try testing it by eliminating all dairy for a week and then load up on crackers or yummy wheaties cereal with rice milk instead of dairy milk. Then if you have a reaction you know it's not the dairy but the gluten. Actually I am not sure wheaties are dairy free. But if you can eat something with wheat but not dairy that should help narrow it down. The idea is to avoid the dairy long enough for those symptoms to go down before challenging with the wheat. If you want an official diagnosis though you need to stay on the wheat/gluten until you have your blood tests done.

[Suprmom]

Thanks for the feedback. I think I have now accepted that I have at least a sensitivity to wheat. GFinDC what you said about pizza definately rings a bell. A while back when DH and I still snuck wheat into the house I couldn't understand why pizza tore me up so much but Mac'n'cheese (with rice noodles) wouldn't. DUH!

Update and rant.

So my first appointment was ok. Doctor told me to make a few minor changes in my diet (lay off the soda) and took blood for the celiac test. I have been putting off going back in but finally decided I had to because my asthma has been out of control. First of all I don't think it helped that I was going in with yet another issue, even though I have seen him before for this. My blood test came back negative for celiac although I am on a mostly gluten free diet anyways so I might not test positive. right? He told me that if I had celiacs it wouldn't matter what diet I'm on. The other bloodwork he ran also showed that I was "perfectly healthy". This time I brought a list of the foods my DS is allergic to and are therefor not a regular part of my diet. Also I had a list of the foods I have gotten sick from within the last 3 months: twice from different "loaded" salads, and once from quesadillas (This is almost everytime I have eaten out. I stuck with things I knew would likely be gluten free the other times and was still rewarded with stomach aches.) When I gave him the lists I swear he looked at me like I was crazy. He told me they all had dairy in them so I must be reacting to milk. I told him that I eat larger amounts of dairy, cheese and milk, at home -on a regular basis- and they never make me sick like this. He diagnosed me with IBS. and told me that is why I get diarrhea so often. I said that didn't make sense since I am only having issues from certain food. Apparently food causes IBS??? He was so stuck on the dairy thing that I couldn't get it through his head THAT'S NOT IT! He want's me to come back in 3 months "for the asthma." Time and energy wasted.

So what do I do from here? Do I find a different doctor? Go straight to a GI doctor? I plan on cutting out ALL gluten and dairy for the next few weeks then trying them one at a time to make sure I know what I am reacting too. For the last two years I have been mostly gluten free but have a cookie or meal once in a while. My lactose intolerance is hardly an issue for me anymore which would make sense with celiac disease. Right? In the past I have had all sorts of issues with brain fog, fatigue (I use to need 10hrs sleep to function), depression, etc. and these are alot better now then the use to be. Do I attribute this to gluten free or is it just coincidence? DH has been convinced that I have celiac's disease from the day I told him about it. He teases me for my sick fascination with hurting myself every time we go out. I just want to KNOW what is wrong with me so that I can fix it. Seriously, I think that it is possible that other members in my family have celiac and/or DH. Even my mom is half convinced she has it but says that she's so old now it doesn't matter. She thinks my great grandma might have had it. My brother has severe eczema and psoriasis (which the doctors tell him is next to impossible to have at the same time) and he had a lot of issues as a child with food and diarrhea. Of course at the time they couldn't figure anything out other than he had food allergies of some sort. DS has food allergies galore (7 currently) and every allergist has told me it sounds like he might have celiacs also based on his reactions. GI doctor told us it doesn't matter since he does have "true" food allergies to all the gluten grains. I feel like almost everyone I know thinks I am just trying to make this up because DS has food allergies. I guess in a way I am lucky that he is allergic to so much because I'm not sure that I would have figured out that my issues weren't just lactose intolerance otherwise. I guess I just need to vent and get some reassurance that I'm not completely off my rocker here.

[GFinDC]

Hi Suprmom,

It doesn't sound like you are off your rocker. You know how your body feels and reacts much better than a doctor or anyone else can. You probably already know that lactose intolerance often goes along with celiac due to the villi damage in the small intestine. It seems like you doc is saying it doesn't matter about your son's possible celiac because he is already avoiding gluten due to food allergies right? I guess that makes some sense. The thing is though the celiac genes are passed along from the parents, so if your son has celiac one or both of the parents should have the genes also.

A 2 week trial avoidance on dairy and gluten sounds like a good idea. It does matter if you are eating gluten before the celiac blood tests. If you are gluten free the antibodies should fade away and the tests won't see them.

You might want check out some threads on elimination diets here too. Limiting varieties of foods and keeping a records as you add test foods in once every few days is helpful. Some people find they have reactions to other foods also, like nightshades, corn rice, sulfites (not really a food but a good way to make any food less edible) nuts, eggs etc.

I hope you figure it out!