For Those Who Are gluten-free But Tested Negative....

[jayhawkmom]

My daughter tested positive for wheat allergy a few months ago. Immediately, I pulled all wheat/gluten from her diet. We had a standing order for a Celiac panel, and was then informed that she had to be consuming gluten for the tests to be accurate. We both started eating it again...and both felt like crud.

Her endoscopy was on the 13th of June. Negative for Celiac (specific) but positive for lower intestinal ulcers. Put on a gluten-free diet, and Prevacid. Dietary response has been terrific.

We both went back on the gluten-free diet. I've been MUCH MUCH more careful about what I've been feeding her, than watching myself. I wasn't feeling all that much better, but realized that I've been "accidentally" glutening myself because I've just not been paying attention. I've been eating things I would "assume" are gluten-free. However, she's ONLY been eating gluten-free foods.

At the recommendation of many, I've decided to go ahead with the testing. However, I fear a negative result. I would feel better knowing definitively. I'm not against having an endoscopy if the results are negative. I just fear that I won't be able to "stick to it" as well as I know I should (based on the way I felt the first round of a gluten-free diet when she was first diagnosed wheat allergic).

What makes you stick with it? Is it the way you feel after eating it?

I hope I'm not sounding like an idiot here... I'm just curious. I already know I feel better when I'm not consuming it. But I fear that without an absolute positive on the blood test, everyone around me will assume I'm just nutty and that it's all in my head. Any insight would be appreciated. Thank you.

[skbird]

Hi! I can understand wanting the legitimacy of a postive test as proof to those naysayers. But I didn't end up getting one either, just have had so many little health issues clear up and started feeling so much better - after a while I was so comfortable with being gluten free I feel no need to justify it to anyone.

Basically, if you feel better eating this way, you should stick with it. Many vegetarians eat that way out of choice, not because they are medically required to, and not all of them do it for philosophical reasons. Some just don't like meat.

Since you do feel better when you're not eating gluten, that's enough of a reason right there. You should go with that. And, it's good for your daughter, too. As you practice this, you'll feel more comfortable eating gluten free around other people. I still get a little shy about ordering at times, but I never feel bad about requiring my food to be a certain way. It gets easier as time goes by.

This forum is a great resource. Keep reading and stick around. You'll find all the support you need.

Stephanie

[prinsessa]

Some people think I am nutty and that it is all "in my head" (my BIL told me this), but I don't really care. I feel much better and that is what counts. It can be hard to go against the grain (no pun intended), but you need to do what is best for you and your family. I really don't know why people care what other people eat since it isn't affecting them. I think they just don't want to face their own eating habits and think that they might be eating something that is bad for them.

And having a postive blood test won't guarantee that people won't still make comments about your diet. A gluten free diet is strange to most people. I thought it was a little strange until I started doing it myself....so I kind of understand why others don't really understand.

[CarlaB]

I needed to know, so I went on a 6 week gluten challenge, got real sick, my endoscopy came back normal. Now I know 6 weeks is not long enough, I've had celiac symptoms since early childhood, and my husband describes me as a "different person" now that I'm gluten-free.

My blood test was also negative, but I was gluten-free at the time and not on a challenge. I ended up going to Enterolab because you do not have to be consuming gluten to find an intolerance. I tested highly positive, and I had been gluten-free after my gluten challenge for 3 months. I'm happy I shelled out the money for Enterolab, but it would not have taken them to convince me to stay gluten-free as I get really sick and break out in a rash when I eat gluten. I don't know if the rash is dh; my doc never had any interest in testing it (it looks like a mild form of the pics on the internet). The reason I'm happy about it is I can say for certain to family members that I have a problem with it and they might, too.

[jayhawkmom]

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And having a postive blood test won't guarantee that people won't still make comments about your diet. A gluten free diet is strange to most people.

Well, yea...that's true. Never really thought about that. I guess it's just easier to say, "Well, I tested positive so I can't eat it." I does seem kind of ridiculous when I think about it that way. I really don't need any blood tests to tell me that I know I feel better. "Issues" clear up, and I have more energy - overall.

I'm going for the testing moreso for my kids. If I have it... they'll all need to be tested. If I don't, I'll make my husband get tested. Though, I'd be way surprised if he had it, as he has absolutely no symptoms/signs.... and I do.

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I've had celiac symptoms since early childhood,

Ya know, I've had numerous problems throughout my entire life. As a child, I would get unexplained rashes all up and down my arms and legs. No doctor ever diagnosed me with anything. I had constant stomach aches (still do) and I could go on and on, up and down the "typical" list of Celiac symptoms. I keep wondering why my parents didn't try to figure out what in the world was wrong with me.

Of course, until I started researching Celiac, I had no IDEA that any of the issues I've had over the last 30 or so years had anything to do with Celiac. Now I do.

You are all so kind and welcoming....and I really appreciate it!

[rinne]

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What makes you stick with it? Is it the way you feel after eating it?

Yes.

I have known for years that I don't digest wheat and would generally avoid it but I would also make exceptions, toasted tomato sandwiches when the summer tomatoes from the garden are perfect and shortbread cookies at Christmas, and wedding cakes or really any cake served to me.....you get the picture. I would deal with the discomfort and swear to avoid it altogether. Then one day I crossed a line between getting away with it and getting bitten on the #%&. I melted, I lost 35 pounds and was in extreme pain, could only lie down and be comfortable, just sitting really hurt, couldn't eat anything because it felt like my guts were on fire.

I went completely gluten free about two months ago and after about two weeks I started to feel a little better and then was accidentally glutened, it was very obvious that it was gluten that was causing the extreme pain. In just the past few days I have started to feel like I am "turning a corner" with my health. I find myself singing again and dancing for no reason, just being glad that I am alive.

I am 51 now and also have Ankylosing Spondylitis, spinal and lumbar inflammatory arthritis, which is related to Celiac through the gut and is genetic. I understand now what is meant by the "cascade" of illness which can befall someone who is not diagnosed early. I know now the migraines I had in my twenties and thirties were related to the Celiac. I suspect there is a relationship between other problems I have also had and the Celiac.

I do not have a positive diagnosis and no longer need one to know for myself what is poison to me.

And no, you do not sound like an idiot.

[kabowman]

I chose not to pursue a definite answer for myself - but - I want a positive for my kids for school and their dad. He won't even believe they have any problems now and they avoid food on their own until they go over there and come home sick for days. He said,"I don't believe he has a problem with lactose because he is fine at our house" of course, he said the same thing about his asthma though too--his doc seemed surprised by the food comment and confirmed it with my son.

Actually, when I talked with the school about his lactose intolerance, they were fine but that isn't demanding that they supply a special meal for him. At this point, we are in a waiting pattern for test results.

[jayhawkmom]

I am lactose intolerant - and up until last Sunday, I had no idea there was a corrolation.

I'd gladly give up gluten if it meant I could have ice cream. =)

[CarlaB]

  jayhawkmom said:

Ya know, I've had numerous problems throughout my entire life. As a child, I would get unexplained rashes all up and down my arms and legs. No doctor ever diagnosed me with anything. I had constant stomach aches (still do) and I could go on and on, up and down the "typical" list of Celiac symptoms. I keep wondering why my parents didn't try to figure out what in the world was wrong with me.

I would hear my mom tell people I had a low threshold of pain. She couldn't believe that there was the possibility I was sick so much. I had constant stomach trouble, and many other symptoms. I thought it was all normal until I got really sick. My mom and sisters still don't believe I have it ... probably because two of them probably do as well and they wrote off my being really ill as part of my hypochondria (that I don't have!!). I don't actually see them as they live more than a thousand miles away, but if I did, I wouldn't ever eat with them unless I brought my own food.

[tiredofdoctors]

I am negative for everything Celiac except for Antigliadin antibodies . . . those bad babies are destroying the cerebellum of my brain, so I choose to be gluten free -- forever! I had a wheat allergy as a kid, but it wasn't that severe, and we had never heard of Celiac . . . and, as an adult, didn't know that I could develop antibodies only to gliadin WITHOUT having Celiac. I'd go ahead and have the testing done . . . but, if your daughter and you both do better WITHOUT gluten, I'd stay gluten-free. Can't hurt . . . will probably help. Good luck to you . . . . Lynne

[4getgluten]

  jayhawkmom said:

What makes you stick with it? Is it the way you feel after eating it?

I hope I'm not sounding like an idiot here... I'm just curious. I already know I feel better when I'm not consuming it. But I fear that without an absolute positive on the blood test, everyone around me will assume I'm just nutty and that it's all in my head. Any insight would be appreciated. Thank you.

I stick with it because I feel so good! I've had stomach problems all my life then in late 2004 it got really bad. I was afraid that I would have to quit my job. I never want to feel like that again. My Dr. tested me for everything but Celiac. He told me I was healthy, and I had nothing to worry about. I tried a gluten-free diet on my own, and within 3 days I knew I was gluten intolerant. At first I thought I would need a firm diagnoses. I never got one, and I'm fine with that. I have no problem sticking to the diet.

Yes, I know my family and friends think that it may be all in my head, but I don't care. And, you know what, they don't really care either. They want me to feel good and be happy. For people who don't know what I've been through, I tell them that I have Celiac disease. Then I explain to them that it means I am gluten intolerant. I consider myself lucky to know what foods cause me to get sick. I think there are a lot of people who suffer from food intolerances and don't know it.

Listen to your body and do what's best for you.

[Nancym]

Do yourself a favor and read the book "Dangerous Grains". It will explain why you should take your own symptoms seriously. Sticking to the diet should be a lot easier with that knowledge.

[jayhawkmom]

Thank you, everyone, for the replies. I went ahead and had the testing done yesterday... and started an official gluten-free diet today. My fear though is that they are going to want to do an endoscopy. I know I feel better without, so why continue to eat it just for a biopsy??

Anyhow, i appreciate all the help. You guys are great!!

I'm heading out on vacation right now, but I'm sure I'll be checking in now and then, looking for help and advice. I'm nervous about how to deal with my children's "well meaning" grandparents. They are all greatly looking forward to "spoiling" the grandkids. And, that means food. I'm going to have to take the food out of the equation, getting prepared to use my iron fist!! =)

[tiredofdoctors]

You go girl!!! That Iron Fist comes in handy when it has to do with keeping your kids well!!! I thought the same thing about the endoscopy since my bloodwork was negative, but if I had to do it again, I would STILL have it done . . . it is the definitive test. And yet, I still think that if you FEEL better gluten-free, that is more of an indicator than any test . . . but after the things that I've been through because of gluten -- I'm a little biased.

[jnifred]

I was exactly wher you are with things about 7 months ago. Worried about other people thinking I am a nuuty fruitcake when I don't have a positive test. But I had been unknowingly eating a very very low gluten diet for years....... I ate gluten with everymeal for a week before my blood tests. I was sick sick sick sick sick. There is no way I could do the 6 week or 3 month gluten challenge and still take care of my family. My husband has seen the affects of a little accidentaly glutening and now helps me stay away from it.

I have so much more energy, just generally feel better, don't get the bloated feeling , I've actually lost weight, I think the bloating was part of my problem. Every once in a while I wonder if it is all in my head, and then I do something stupid like take a bite out of my youngests taco from TB and get sick b/c there is gluten in the seasoning. My occasional accident is sometimes good, it re-inforces for me that it is NOT all in my head. And I am to the point now that I don't care what anyone thinks. It is none of their business what i eat and don't eat. And I feel great!!!

Good luck!!!!