My Daughter Tested Negative!

[Electra]

I will get my results in a few days, but I'm really confused now. I know there is a huge chance for a false negative with a 2yr. old, but I really think if we had this one of us would test positive. I'm so nervous. As much as I DO NOT want to have this disease, I really want an answer to all of my symptoms. How in the world am I going to get through this if I still don't have an answer after all of this. I know something is causing my symptoms and I just want ANSWERS!! Man if I have to put up with one more negative I swear I'm going to LOSE IT!!

[celiacgirls]

It might still be the answer even if your test is negative, too. My younger daughter is the only one we have had tested with the blood tests and they were always negative. I was thinking her tummy problems were gluten related and even had her do the gluten free diet but because the doctors said gluten wasn't the answer, we didn't stick with it. Finally, when she was 8, I had her tested by Enterolab and they confirmed that gluten was a problem. The rest of us have also eliminated gluten and gotten rid of problems we didn't know we had!

If your test is negative, and you have reason to think gluten is the problem, try the diet and see what happens. You will need to be very strict about it. I tried the diet a few years ago to see if it would help migraines and I didn't notice much. But I wasn't worried at that point about the hidden ingredients or cc. I just eliminated the obvious sources of gluten.

[tarnalberry]

The next step is to try the diet. You know the tests are unreliable in one so young, so a negative is just a "ok, it *could* be something else, but it could still be this" sort of indicator. Not to mention that the tests aren't even always positive in adults that have it.

Give the diet a try. (I, for some reason, think you've done this a bit and noticed some difference...?)

[clhsc]

My blood work also came back negative and my doctor said that even though medically speaking he didn't think gluten was the problem, that if the diet was working to stick with it. It acknowledges the high rate of false negatives in the blood test.

[Electra]

The diagnosis is important for me. I have to have that diagnosis in order for me to feel like I need to stop searching for an answer. If it's not Celiac then I need to keep searching, because I'm not well and I need to know what is happening here. I have only cut out gluten for a day here and there and it seemed to help, but I had my attack on Friday morning and never ate gluten until Saturday afternoon. I have been eating stuff filled with Gluten since Saturday afternoon. I even ate Ritz crackers again yesterday and I've only had a slight change, so why in the heck am I not having a major reaction again if it's the Gluten. I've had enough gluten to kill an army in the last few days, and I've had bigger reactions on Ritz crackers alone, so maybe it's not Celiac after all? How in the heck will I ever know without a diagnosis UG!! This really stinks!!

[CarlaB]

What are your symptoms?

[Electra]

Well my daughter has a skin rash that looks like Dermetitis Herpetiformis and it comes and goes. Plus she has very soft, foal smelling stools most of the time, She has irrate temper tantrams (but they seem to be on and off) she gets very red eyes and they look sunken like she's exhausted. She's 2 and lays around and sleeps a lot for her age. I have almost every Celiac symptom there is but now I'm wondering if we have Porphyria Disease because I was on antibiotics both times I had the attacks and Porphyria will bring on massive stomach pains and it's often brought on by anit-biotics!! If I have Porphyria then the diet is the opposite of the gluten free diet and I have to have a lot of carbs so if I don't know which it is then I will surely bring on another attach UG!!

[ravenwoodglass]

Well my daughter has a skin rash that looks like Dermetitis Herpetiformis and it comes and goes. Plus she has very soft, foal smelling stools most of the time, She has irrate temper tantrams (but they seem to be on and off) she gets very red eyes and they look sunken like she's exhausted. She's 2 and lays around and sleeps a lot for her age. I have almost every Celiac symptom there is but now I'm wondering if we have Porphyria Disease because I was on antibiotics both times I had the attacks and Porphyria will bring on massive stomach pains and it's often brought on by anit-biotics!! If I have Porphyria then the diet is the opposite of the gluten free diet and I have to have a lot of carbs so if I don't know which it is then I will surely bring on another attach UG!!

Your doctor can diagnose Porphyria if there is any chance you have that going on, ask him to test you. You mentioned you have tried the gluten free diet "a day here and a day there", that is not going to tell you anything. The autoimmune response that goes into play with celiac and gluten intolerance is a delayed and systemic reaction. And it takes a while for the inflammatory reaction to subside and for symptoms to go away. To tell if the diet is helping you have to actually do it for at least a month or so. I know it's hard but if it is your problem getting rid of the gluten can change your life and your daughter so much for the better.

[Nancym]

Well my daughter has a skin rash that looks like Dermetitis Herpetiformis and it comes and goes. Plus she has very soft, foal smelling stools most of the time, She has irrate temper tantrams (but they seem to be on and off) she gets very red eyes and they look sunken like she's exhausted. She's 2 and lays around and sleeps a lot for her age. I have almost every Celiac symptom there is but now I'm wondering if we have Porphyria Disease because I was on antibiotics both times I had the attacks and Porphyria will bring on massive stomach pains and it's often brought on by anit-biotics!! If I have Porphyria then the diet is the opposite of the gluten free diet and I have to have a lot of carbs so if I don't know which it is then I will surely bring on another attach UG!!

There is no creature on earth that REQUIRES gluten (except maybe the dreaded Gluten Weevil). You can eat a high carb diet without eating gluten.

[Electra]

Oh I know I can eat high carbs without gluten, but the supply of gruten free foods around here is pretty limited, and I'm very picky and don't like many high carb foods that are gluten free, so it would just be personally difficult for me to follow a gluten free diet if I didn't feel like I had Celiac disease!! I just need to know for medication purposes, and why put myself though the stress of a Gluten Free diet if it's not necessary? It's just a hard decision to make and I'll probably wait until I have no other options left before I decide to go glutan free!! I have been on a low carb diet before and felt better then I've ever felt on any diet before, so I'm pretty sure it's not Porphyria, but I'm just so confused at this point that I don't know what to do!!

[Guest nini]

you can get tested to rule out the Porphyria, but if that doesn't answer your questions then what?

if gluten is a problem for you and your daughter, you may be non celiac gluten intolerant or pre celiac gluten intolerant, either way, positive dietary response is going to be your best indicator if it's a problem.

Don't make the same mistake I did... I "tried" the diet but then went off it, and then several years later very nearly died. Yep I was near death by the time I was dx'ed. Seriously, it will not hurt to try a gluten free diet and you do not need to buy any specialty food to do it, just stick with a diet of foods that are as close to nature as possible. Clean organic lean meats, organic fruits and veggies, grains like quinoa, rice, tapioca, millet, buckwheat (not really a grain), nuts and seeds... there really is a lot you CAN eat on this diet, try focusing on that.

I'm not gonna lecture you, your a grown up and can figure this out for yourself. I suggest keeping a food journal and seeing if you notice a pattern.