His Bloods Were Negative - What Do I Do Now?

[girlfromclare]

HI Guys,

You might remember my last post, about my four year old boy. He has some symptoms of celiac disease and I was so sure that this was the problem. Let me recap... He has always been unhappy and has had issues with dairy since only a couple of months old. He has issues with certain sugars too and has reactions that involve rolling around on the floor, screaming, kicking, crying and being aggressive (only in relation to certain foods) and although his general behavour is fine and he has very good periods, they are short lived and he does spend a lot of time being irritable and sad. He has very pale complexion and has only put on less than 2lbs in the last year or more. So we got a huge amount of blood tests done, allergies, liver function, diabetes, full celiac screen etc etc and all came back normal. I should be thrilled, but Im not. I feel awful. I feel guilty... like I put him through the trauma of getting the bloods done and for what? THe reason I kept coming back to celiac was that my husband has a range of digestive issues, he suffers from vomiting, recurrent diahorrea, irritability, moodiness, bone pain (shins when he walks) back pain and fatigue. My husbands sister suffers from digestive issues also, and has thryoid problems, anxiety, palpitations and a history of unexplained miscarriages. My husbands father also has disgestive problems where he will be sick after eating or things will 'run through him' as he describes himself and he is a diabetic. A case of an undiagnosed thread of celiac disease in this family keeps running through my mind. But where do I go from here? My husband is getting his bloods done next week so I guess its our last hope. If he is diagnosed positive, then the liklihood of our son having it is increased and maybe then I can presuade the rest of the family to get tested. I am so weary from it all. At the moment, they think I am a bit neuroitc!! And Im beginning to wonder are they right?

Does any of this sound familiar??

Many thanks in advance of any replies x x Liz x x

[Guest cassidy]

My blood test was negative and I certainly have a problem with gluten. The blood tests are only about 50% accurate, so if they are positive then you have it but if they are negative they can't rule celiac out. You were doing what you thought was best by getting the blood tests done. Yes, they are scary for a kid but what if they found something really wrong? In medicine they always try to rule things out, so it was the responsible thing for you to do.

Do you keep a food diary for him? Do you know exactly what food cause him to act out? I would recommend doing that and removing those foods from his diet - if you haven't already.

I would also recommend trying a gluten-free diet. It won't hurt him to do it and you might see an amazing improvement. Just be careful about changing too many things at once. If you take a ton of stuff out of his diet and he gets better it will be hard to determine which foods caused the improvement.

Your husband's entire family could have celiac and they could all come back with negative blood tests. I wouldn't worry about them right now, I would try to get your son's diet under control. If he starts feeling better maybe the family will take you more seriously.

My father was also sick when I was a sick child. We both needed the same surgery, which I really didn't need since my symptoms were due to celiac and not what they thought. I have wondered if his symptoms were due to celiac as well but my mother has it and I would hate to think both my parents have it. Anyway, my mother made my father go through all the tests and have the surgery before me. He was the guinea pig. If the diet will be hard on your son, maybe you can start your husband first and see if he reacts well. If he does, then you could try it on your son.

[girlfromclare]

Hi cassidy, thanks for that. We have had our son on a dairy free diet for about two years now and although there was a marked improvement in the mood swings, he still has desperate reactions to other things that we havent quite been able to pin point. For instance, we know he reacts to apples - they give him terrible pains - but he sometimes will have reactions that we couldnt have known like for example, he has a cyst on his lower eyelid that we gave him an anti biotic for - he rolled around in pain, screaming and kicking. We couldnt get near him. The anti-biotic had a high sucrose content and it was advised not to give to children wth any malabsorption issues. My belief is that his malabsorption issues are a result of damage to the small intestine and coupled with his little to no weight gain over the past year, his pale, sickly complexion, his irritiability, his being extremely emotionally fickle and the family problems in general, I was led to celiac disease.

I am concerned for my son - I am concerned for my husband and for his family and to be honest this damn problem is keeping me awake at night. I wish I could get a definitive answer once and for all!! I will wait a little longer and see how my husbands bloods turn out. I do want to put my son on a gluten-free diet now but I would get so much flack from everyone that I think I will wait a little while longer and see if my husband is indeed celiac. If he is, then there will be no hestitation on putting him and my son on the gluten-free diet.

Oh its so hard to know whether you are doing the right thing or not....

I truly hope that you and your family are doing well.

Thanks for caring

liz x

[tarnalberry]

I would encourage you to try the diet and see how it goes. Possibly as part of an elimination diet. It may take many months to work through an elimination diet at this point, since you don't have a good idea where to start, but it may be the only way to find out.

[Guest cassidy]

I am concerned for my son - I am concerned for my husband and for his family and to be honest this damn problem is keeping me awake at night. I wish I could get a definitive answer once and for all!! I will wait a little longer and see how my husbands bloods turn out. I do want to put my son on a gluten-free diet now but I would get so much flack from everyone that I think I will wait a little while longer and see if my husband is indeed celiac. If he is, then there will be no hestitation on putting him and my son on the gluten-free diet.

Oh its so hard to know whether you are doing the right thing or not....

I truly hope that you and your family are doing well.

Thanks for caring

liz x

I'm sure this is hard for you. I know my mom felt terrible when I was diagnosed. I was so sick as a kid and she took me to all sorts of doctors but I was always misdiagnosed. I certainly don't blame her for anything but I know it was hard on her. She came down just last weekend and made me tons of gluten-free food because I'm pregnant and not really feeling well.

Who cares how everyone else reacts to you putting your son on a gluten-free diet? I have already learned there are a million different theories on how to raise kids and if you listen to them all it will drive you crazy. If you are upset because you are just waiting, if you stop waiting and start doing something, it may make you feel better. You may never have a definitive diagnosis until you try a diet because the tests just aren't that accurate. Worst case, you are wrong, the diet doesn't help and the family can say "I told you so." I don't know how often you see them but maybe by the time you see them he will be feeling better and it won't be an issue, or you would have gotten your husband's test results back.

Hope things get better for you.

[girlfromclare]

Cassidy,

Congratulations on being pregnant. How wonderful is that! I'm sorry you arent feeling well at the moment though! And it must be unusual having cravings while going gluten free.... but then cravings are funny things arent they. Is there gluten in coal I wonder???? Only kidding... but I knew a lady who craved coal while she was pregnant. Very strange!

I know you are right about not caring what other people think about whatever decisions I make as a mother. And to be honest that is normally how I do feel. I've always 'gone my own way' if you know what I mean... but with this, its getting a little bit tiresome having to justify my decisions and also without any medical diagnosis its harder to do so. Maybe Im even doubting myself a little.... Anyway, I think you are right. I should just make a decision to gluten free and see how he goes while waiting in the meantime for my husbands results.

Thanks so much for telling me what I needed to hear

Good luck with the pregnancy.

Liz x x

[TCA]

A year ago, my husband's family also thought I was a bit neurotic. We were going through our 3 rd round of testing for my son for celiac and it was inconclusive, so the dr. said he didn't have it. Yet, he still had classic symptoms. I then found out that testing is often inaccurate on kids under 5. In Jan. I decided to do a diet trial (neurotic, right?) and the results were amazing!!!! I highly recommend doing a diet trial and see if he improves. That may be all the proof you need. His GI now agrees that it's celiac disease, but isn't putting the diagnosis on his chart because he knows that I will keep him on the diet and there's no use b/c it will only make it harder for him to get insurance later. I agree.

My husband's family no longer thinks I'm neurotic and are also amazed at the progress in the kids, but are in complete denial that they need to be tested too. Still praying for that one!

Good luck! If you do want to try the diet, there is a link in my sig line to another thread that talks about how to get started. That may give you some things to think about!

[Guest nini]

my daughter's tests were also negative, but I tested positive, so we put her on the diet to miraculous results...

[Ursa Major]

Liz, it is possible to have gluten intolerance without actually having celiac disease. If that is the problem, none of the traditional tests will show anything. But gluten intolerance is every bit as serious as celiac disease, and will make people just as ill.

The only place at this point that tests for the gluten intolerance genes as well as the celiac disease genes, plus the other values, is Open Original Shared Link. So, if your husband's blood tests come back as negative, you may want to go that route if you feel you need an 'official' diagnosis.

Some more great things about Enterolab are, that you won't have to put your kid through more bloodwork, as it's stool testing, and also, their tests are much more sensitive than the traditional ones, but the best one: You don't have to eat gluten to get an accurate result (eventually though, of course, it would be negative, too, after about a year or so). The only drawback is, that it isn't cheap.

So, you might as well just start your son being gluten-free (not your hubby, if he is still waiting to have his blood drawn), if he responds well you will have your answer anyway.

[Guest cassidy]

Cassidy,

Congratulations on being pregnant. How wonderful is that! I'm sorry you arent feeling well at the moment though! And it must be unusual having cravings while going gluten free.... but then cravings are funny things arent they. Is there gluten in coal I wonder???? Only kidding... but I knew a lady who craved coal while she was pregnant. Very strange!

I know you are right about not caring what other people think about whatever decisions I make as a mother. And to be honest that is normally how I do feel. I've always 'gone my own way' if you know what I mean... but with this, its getting a little bit tiresome having to justify my decisions and also without any medical diagnosis its harder to do so. Maybe Im even doubting myself a little.... Anyway, I think you are right. I should just make a decision to gluten free and see how he goes while waiting in the meantime for my husbands results.

Thanks so much for telling me what I needed to hear

Good luck with the pregnancy.

Liz x x

Thank you. It has been hard to crave pizza and things that just don't taste right gluten-free. I am glad I found out before I got pregnant because I know it is better for the baby.

My mom is the one who diagnosed me. My husband called it an "internet diagnosis" until I started feeling much better. I started off by telling people "I think I have this" and that opened me up for all sorts of questions. When I just said "I have this and this is the diet I need to be on" people asked questions about the diet but didn't question why I was on it. Now, if I have to talk about it I act as sure as if I had a positive biopsy and there is no question of the diagnosis. It isn't like you are not feeding him vegetables or protein, so even if this isn't it, the diet is safe to try.

Hope your little guy feels better soon.

[girlfromclare]

Thanks a million to everyone for your advice. I certainly feel a bit better about this than I did this morning... when I was a mess!! Ursula, I tried and tried to look up enterolab just now but for some reason I cant connect. I will try again in a little while, but just wondering, is it an international thing? I am in Ireland. Would that matter? I will certainly look it up again later anyway. And thanks so much for shaing your expereince with me. I really appreciate it. If it is safe for me to put him on a gluten-free diet before the enterolab test then I think I will. Hopefully we will see the results for ourselves.

Many many thanks to you all...

x x x x

[girlfromclare]

HI everyone, no news really except that my husband has been tested and we are waiting now for his results to help determine whether celiac disease is in the family or not. However, in the meantime, I spoke briefly to my sons pediatrician again today just to double check and I just asked him (although I already know the answer from having read all your posts) is it likely that he has celiac disease even though his bloods were negative, going on the theory that it is difficult to get a conclusive positive result in children under six. He said I was totally misinformed and that the blood tests in children are completely accurate and that we can take it now as definite that he does not have celiac disease. So that is the 'medical stand' that this particular doctor took.

But, I posed to him, how do you explain the symptoms that he is displaying and seeing as you think

he doesnt have celiac disease and appears to have clear allergy resutls, where do we go from here... To that he did not have any answer. I am determined to prove him wrong though and I will return with an update as soon as I know anything else. Thanks again for all your help...

Liz

[Ursa Major]

Liz, I hope your husband's results will be positive. And your doctor is totally, utterly wrong in saying that blood tests are completely reliable in young children, and that your son can't have celiac disease. Heck, the blood tests aren't even reliable in adults! That kind of doctor makes me so angry.

Have you been able to connect to Enterolab yet? I just clicked on the link I provided, and it works fine. They may have had technical difficulties when you tried before, any website experiences those once in a while.

[girlfromclare]

Liz, I hope your husband's results will be positive. And your doctor is totally, utterly wrong in saying that blood tests are completely reliable in young children, and that your son can't have celiac disease. Heck, the blood tests aren't even reliable in adults! That kind of doctor makes me so angry.

Have you been able to connect to Enterolab yet? I just clicked on the link I provided, and it works fine. They may have had technical difficulties when you tried before, any website experiences those once in a while.

Hi again Ursula, I know!!!! He made me angry today because not only was he wrong, and making no effort to listen to what I had to say about the situation, but he also made no effort to suggest any other reason to explain why our son is so upset, run down and practically deteriorating before our eyes and didnt seem sympathetic to our plight at all. I was so sad. In fact, I lied to my husband about it - not that there was any need - in fact I dont know why I did, but I told him that the doctor suggested that he be tested and that we put our son on the diet anyway. He is a good understand guy - so not sure why I felt the need to do this and also I feel a bit guilty about it now... but him getting tested is a good thing isnt it. By the way, your link wasnt the problem as I tried the site directly also but to no avail. They may have been having problems. I havent tried them since but I will do now after I finish this post! If they operate internationally, then I will most likely do it, although I have made up my mind about putting my son on the diet anyway, so I best check would that affect the stool test.

Anyway, thanks again for posting.

Much appreciated!!

Liz x x

[Ursa Major]

Liz, yes, Enterolab will provide service internationally, I checked with them on that a while ago. But in young children, the diet is the best test, anyway. Oh, and you don't have to eat gluten for an accurate result with Enterolab. It will still be accurate up to a year after you eliminate gluten.

So, if the diet shows dramatic results, I wouldn't bother with Enterolab, as shipping would be expensive for you (you'd have to send the samples back by courier). But if the diet is inconclusive, that will still be an option.

[girlfromclare]

Ursula, thanks for that. I just logged on successfully to their website and the whole thing seems very tempting indeed and definitely an option if I feel I need a definite diagnosis... as well as the diet that is. I emailed them to find out what it would amount to in Euros etc and so I will definitely consider it if it isnt astronomically expensive. I know there shouldnt be a price on our health and that of our children but when the diet is also a good diagnosis tool ... and considering money doesnt grow on tress despite living in a land of green fields and lush growth, ... I will have to take the price into consideration too. Still, I'm tempted though!!

Ill keep you posted on our situation.

Thanks again for your help and imput. I feel very privilaged to have found you all on this site. You are marvellous.

Liz