How To Cope After Negative Blood Results

[Hailiesmom08]

My daughter and I both stopped consuming gluten after pin pointing that it makes us ill. Her doctor recommended to avoid testing that as long as she was doing good on the diet she was on then great. Me at the time not knowing much about celiac and being a first time mom to boot though okay that makea sense. But of course as weeks/months followed I wanted to learn more about celiacs disease. I had no idea if we wanted to be tested we would have to consume the very thing that made us sick

We tried the gluten challenge with our daughter and after two days we decided we couldn't allow for her to go through with it she was not the same child and it took her a month to get back on track. To make the long story short I then decided to try the challenge due to her GI doc stating he could diagnose her based off of my testing results. In the begining I was obly focused on her and that was my whole purpose for taking the challenge. I only lasted a week,and a half and couldn't sainly do it any longer. I was only gluten-free for a month before I started the challenge. My test results cane back normal, and I feel so disappointed. Don't get me wrong I would love to not have issues and these tests be true but I feel something is wrong yet doctors say I'm fine. So in my mind I feel I can't accept that I may have celiac bc I haven't been diagnosed. I don't kbow why this bothers me so bad either. I do remain on a gluten-free diet regardless but im not as careful as I should be. I made almond muffins and used baking soda that was shared on equitment that processes gluten and got so sick from it.

How do you accept that you may have it even after getting negative blood results?

[Bubba's Mom]

It's said that 20-30% of Celiacs test negative, yet they have the disase. You could have an intolerance rather Celiac too? The best way to know if gluten bothers you is by going off it. Then if you have some and react, you know you have a problem with it.

Living without gluten won't hurt you. Just be sure you are getting the vitamins that would have been in fortified foods in your new diet, either through the foods you eat, or supplements.

[Aly1]

I am in a similar position. My health has been devastated the past 10 years and I couldn't find out why. I tested negative for celiac but I get so sick from gluten that I can't help but tie the two together. I am in a wheelchair and have no official diagnosis to explain that to family members and friends and it frustrates the heck out of me.

What I've decided to do is get genetic tests done so at least I might have something there. Is that something you might consider? I have to wait till I get medical insurance again but then I will go for it. There's no way I'll ever do a gluten challenge to try and get a positive result - I just can't do that to myself!

[sa1937]

I am in a similar position. My health has been devastated the past 10 years and I couldn't find out why. I tested negative for celiac but I get so sick from gluten that I can't help but tie the two together. I am in a wheelchair and have no official diagnosis to explain that to family members and friends and it frustrates the heck out of me.

What I've decided to do is get genetic tests done so at least I might have something there. Is that something you might consider? I have to wait till I get medical insurance again but then I will go for it. There's no way I'll ever do a gluten challenge to try and get a positive result - I just can't do that to myself!

I think your body has given you the answer that your testing is unable to. False negatives on testing are far too common.

While the gene tests may be interesting, they are in no way diagnostic as many people have the so called "celiac genes" but never develop the disease. And based on what I've read here on the forum, there are probably other genes involved as well. I don't know if insurance will pay for genetic testing as I've never had any done.

[Hailiesmom08]

Bubbas mom-

I did go off of gluten for a month then tried the challenge and I only lasted 1 1.5 weeks I was so sick. I have to live without gluten if I want to be/feel myself.

Aly1- sorry to hear you are thing through the same thing :/

Genetic testing is a good idea I'll have to look into that. I wouldn't recommend the challenge to anyone.

[kwylee]

Please consider that a negative test for Celiac in no way gauges whether your body is reacting negatively to gluten, and you have proven to yourself that this is so. By making the intelligent choice to listen to your body for the sake of your health and that of your daughter, know that you are gluten intolerant and that is the grandaddy condition that doctors haven't 100% caught onto just yet.

You and your daughter are in good company here.

[Hailiesmom08]

Kwylee-Thank you!

I don't know why I feel I need verbal conformation from a docotor when it's pretty darn obvious that we can't tolerate gluten.

Hubby and I went to chipolte for dinner and I forgot to ask for them to change their gloves ect to prevent CC and I got sick from it. I went back last weekend and they changed gloves gave me fresh cheese and everything and I didn't have one issue.

Prior to thing gluten-free I didn't feel I was that sensitive but now that I am gluten-free I know what it's like to feel normal again and the slightest CC affects me :/

[kwylee]

Kwylee-Thank you!

I don't know why I feel I need verbal conformation from a docotor when it's pretty darn obvious that we can't tolerate gluten.

Hubby and I went to chipolte for dinner and I forgot to ask for them to change their gloves ect to prevent CC and I got sick from it. I went back last weekend and they changed gloves gave me fresh cheese and everything and I didn't have one issue.

Prior to thing gluten-free I didn't feel I was that sensitive but now that I am gluten-free I know what it's like to feel normal again and the slightest CC affects me :/

On the issue of sensitivity, I was the same way prior to removing gluten. It seems that now my body has become extremely fine tuned, and while most of the time we curse it to have this sensitivity, it's really our marvelous human system that's doing its job, signaling when we ingest something that can hurt us and striving for that perfect balance that creates vibrant health for the long term. I would encourage you to keep listening to your body and encourage your daughter to do the same.

I'm just so glad you found us!!!

[Katrala]

You may have celiac. You may not.

However, celiacs aren't the only people who have trouble with gluten. Non-celiac gluten intolerance needs to be on the same diet.

If it makes you feel bad, don't eat it.

[srall]

My daughter and I both tested negative for celiac too, but we had both been off gluten for several weeks, and I wasn't willing to put us through the challenge. I also didn't want to push it in case she did get a negative diagnosis and then go through life not being believed that gluten makes her sick. At least this way I can explain why we got a negative result and that we opted out of the challenge.

I personally believe I have undiagnosed celiac just because I got the DH rash around my joints, but I still call myself gluten intolerant. I don't really know about my daughter.

I really don't believe that celiac is the only dangerous or most dangerous manifestation of gluten intolerance. (I cannot think of a good way to word that.) I believe that gluten intolerance is very dangerous whether it manifests as celiac, arthritis, neurological issues, hives, brain fog, indigestion, confusion, migraines. Unfortunately there doesn't seem to be a good test for GI and apparently not really good testing for celiac. So I agree with above posters that your body has infinite wisdom and that's what you listen to.

The best part of all of this is we got completely off processed foods (well, mostly) and corn syrup and we are so much healthier than we've ever been.

Gluten free diet is legal and you get to decide what you feed your family. Now you just figure out a way to deal with the doubters. Which for most of us means eating at home a lot and not discussing food with others unless it's necessary.

[Metoo]

My daughter and I both stopped consuming gluten after pin pointing that it makes us ill. Her doctor recommended to avoid testing that as long as she was doing good on the diet she was on then great. Me at the time not knowing much about celiac and being a first time mom to boot though okay that makea sense. But of course as weeks/months followed I wanted to learn more about celiacs disease. I had no idea if we wanted to be tested we would have to consume the very thing that made us sick

We tried the gluten challenge with our daughter and after two days we decided we couldn't allow for her to go through with it she was not the same child and it took her a month to get back on track. To make the long story short I then decided to try the challenge due to her GI doc stating he could diagnose her based off of my testing results. In the begining I was obly focused on her and that was my whole purpose for taking the challenge. I only lasted a week,and a half and couldn't sainly do it any longer. I was only gluten-free for a month before I started the challenge. My test results cane back normal, and I feel so disappointed. Don't get me wrong I would love to not have issues and these tests be true but I feel something is wrong yet doctors say I'm fine. So in my mind I feel I can't accept that I may have celiac bc I haven't been diagnosed. I don't kbow why this bothers me so bad either. I do remain on a gluten-free diet regardless but im not as careful as I should be. I made almond muffins and used baking soda that was shared on equitment that processes gluten and got so sick from it.

How do you accept that you may have it even after getting negative blood results?

You just accept it. I mean its hard, but I realized that labeling myself celiac ultimately doesn't matter, if I eat gluten I break out in a terrible rash now, skin peels off its awful...so in that regard I don't need a piece of paper to tell me I have celiac. I don't think I have gluten intolerance either because I have several relatives who can't eat gluten, plus my mother carries the genes for it but also tested negative and I have a sister who has problems.

I don't know how old your daughter is. I have young kids, and they are the only reason I wish I had a diagnosis. To the people who don't understand, and want to know whether I have celiace or whatever, I just tell them I have an allergy.

[Hailiesmom08]

My daughter will be 4 next month and has both blood testing and scratch allergy testing. Everything comes back negative but yet if she eats gluten her belly rolls so loud, she cant sleep, she stops eating and her behavior does a 180. My daughter off of gluten dairy and grains is one happy outgoing kid. You give her gluten and she acts as if she is autistic

My daughter and are are both on a gluten free grain free, sugar free diet to heal,our guts.

If this were an intolerance I'd think it would come back in our blood work? Both her allergist and GI doc have said it is def GI issues.

[Bubba's Mom]

We just can't rely on getting a blood test and KNOW that we don't have Celiac or gluten intolerance. Every test they have right now can give false negatives.

Let your body be your guide. If you or your family members feel better off gluten, there's no reason to keep consuming it!

I hope some day soon they can come up with better tests. Right now it seems like some of us "fall through the cracks" and it's hard to get the support one needs without the DX in a lot of cases.

We have to go with our gut on this one?

[beebs]

You weren't eating it long enough after being gluten free anyway. I know how you feel, I am undiagnose, one of my children is neg on the tests and the other was borderline. Its such a kick in the face after all the pain and suffering when it comes back negative.

[Chad Sines]

I read this and said to myself "What is there to cope with?" You do not need any test to tell you if you are on the right track or not. A great many of us here have tested ourselves repeatedly with diet.

[beebs]

I just don't agree with that at all I'm afraid, there could be many many reasons why some people have the symptoms they have, its not always celiac. So what if all us negative ones are on the wrong track?

[Hailiesmom08]

I think that's why I wish I had conformation so I know for a fact I'm doing the right thing and that there isn't any other issues that I'm unaware of.

Grant it yes being gluten free makes me feel so much better and I'll never intentionally eat gluten again I would just like conformation that it is celiac and celiac alone and not other things lol

I am so sensitive to gluten now that I have been gluten-free I don't even know what to tell people if im on a situation where I would need to.

[cahill]

I think that's why I wish I had conformation so I know for a fact I'm doing the right thing and that there isn't any other issues that I'm unaware of.

Grant it yes being gluten free makes me feel so much better and I'll never intentionally eat gluten again I would just like conformation that it is celiac and celiac alone and not other things lol

I am so sensitive to gluten now that I have been gluten-free I don't even know what to tell people if im on a situation where I would need to. ”I can't tolerate gluten”?

There was another thread in which someone said " gluten messes me up".

To me, that is all that needs to be said .

[beebs]

I'm with you Hailiesmom - I just want to know that it is gluten and nothing else underlying etc. Seems to me they rule out celiac and then that is it, its not "It's not celiac so lets look for something else" it seems to be "It isn't celiac, and that is all". Drives me mad!

[mushroom]

I just don't agree with that at all I'm afraid, there could be many many reasons why some people have the symptoms they have, its not always celiac. So what if all us negative ones are on the wrong track?

We could well be on the wrong track, but if it is running in the same direction, and it is taking us to the same place, does it really matter??

The only time it matters is if the track is going in the wrong direction and giving us a bumpy ride, and we do not end up where we want to be. Like with a diagnosis of IBS Eating gluten free and seeing if it helps/solves our problems does not preclude any oher testing or diagnosis or treatment in the future It does no harm to the body. if we do not end up where we want to go, we just catch another train and hope it doesn't lead to IBS too - that place no one wants to be.

[cahill]

When you have negative blood results but a positive diet response that is enough to say " I need to be gluten free".

I understand the concern that something else may be going on. For many of us it is not as simple as JUST celiac or gluten intolerance. There are other autoimmune disease and compilations that we will deal with.

I would encourage you to have other testing if you feel it is needed. If for no other reason to eliminate other possibilitys . And when it is all said and done you will have the peace of mind know that there is nothing else going on.

Do what you need to do but know that it is OK to be gluten free with out your doctors permission or a diagnoses of celiac.

[beebs]

Well, I mean - for example, my son is borderline result and there is no doubt he is far better gluten-free. But there is still something going on with him, he is LF/gluten-free has been tested for everything under the sun including cystic fibrosis and crohn's has been mentioned. We have tried all kinds of elimination diets but he still looks like a starving child, skinny with a huge belly and still has foul bms all the time...arrgh

[mushroom]

Well, I mean - for example, my son is borderline result and there is no doubt he is far better gluten-free. But there is still something going on with him, he is LF/gluten-free has been tested for everything under the sun including cystic fibrosis and crohn's has been mentioned. We have tried all kinds of elimination diets but he still looks like a starving child, skinny with a huge belly and still has foul bms all the time...arrgh

So perhaps it might be necessary to catch an additional train, on another track, to another station. It does not mean that the gluten free destination was the wrong one -- if his symptoms do not resolve it may mean that you need to go further, you got off the train too soon,even though you have journeyed far , not that it's the wrong train. I am assuming he has had endo and colonoscopy to check for UC and Crohns and other digestive disorders (can't remember off the top of my head.)

ETA: I see he is quite young if it is the youngest - maybe you are waiting to do these?

[cahill]

Well, I mean - for example, my son is borderline result and there is no doubt he is far better gluten-free. But there is still something going on with him, he is LF/gluten-free has been tested for everything under the sun including cystic fibrosis and crohn's has been mentioned. We have tried all kinds of elimination diets but he still looks like a starving child, skinny with a huge belly and still has foul bms all the time...arrgh

Is LF legume free? Is he soy and dairy free?

[Hailiesmom08]

Thank you all for your imput! I think bc I haven't been verbally diagnosed I'm still for what ever reason in denial even though my body screams at me with CC.

Beebs- I'm so sorry to hear your son is still having issues

Have you eliminated all grains and sugars by chance?

My daughter had exactly the same issues after being gluten-free for 8 months. We then decided to put both her and I on the SCD diet, after a few weeks of her body adjusting her inflamed belly is gone and the nasty fould sticky poos are gone too!

Now we are cleaning her system out with miralax bc she had 5 ft of build up stools in her.