I Can't Stand The Guessing Game Anymore....please Help!

[mom2easton&eli]

3 years ago, my son had blood work done. The doctor said it came back "slightly positive" and asked me if I would like to persue the biopsy. We did and it came back negative although the gastro doctor and everyone else for that matter treated me as if I were crazy for having the test done because my son looked healthy and endoscopy only took about 5 minutes so I feel there is a chance he could have easily missed something. We were referred by his pediatrician because he had dropped from the 75th to the 25th percentile and has behavorial problems. Well, after the negative biopsy and being treated like a crazy lady, I dropped the notion that my son had Celiac Disease and I never looked back. Although, I kept it in the back of my mind that if ever there was a problem in the future, I would get him re-tested because I knew that 2 years old can be too young to get a positive biopsy.

Fast forward to the past 6 months. Now I have Celiac Symptoms believe it or not. I am fully convinced I have it. Stomach aches after eating, horrid joint pain, fatigue, etc and feeling so much better with out the gluten. Well, during these past few months my son has also been taken off gluten and it made a world of difference in his behavior, in his underwear (on gluten he basically has to change his underwear after every BM due to not being able to hold it in until he gets to the toilet) and he actually GREW a lot! So I am convinced he has it. However, I don't feel that I can ask him to make this life long commitment to being gluten free without having absolute proof. I would always wonder if it was really necessary and being that it is so difficult and restrictive, it would break my heart not knowing. So, we thought we were going to get insurance and I got him back on the gluten to get him tested and our house is once more a nut house, his underwear is skidded and just today it dawned on me that his legs are looking bowed. I googled that and I found out about Rickets then read that Rickets can be from Celiac Disease. Well, we still don't have insurance and my husband is going out of town for 2 weeks and I don't know if I can handle my son being on gluten because he is such a good kid without it and quite the opposite on gluten. So finally, in summary: What is a slightly positive blood test???? Should I get my son retested or should I get the gluten out of his diet forever???? I feel like I"m going crazy over this. I feel like it is hurting him but I don't want to hurt him in other ways if he commits to this diet for life not even needing it.

And here is just a little side note if you are still awake and if you have read this far: The other day, his crap ran down his leg and he said "I want to get tested. My body is telling me to get tested!" He's almost 5. It was so sad.

My husband is out of work due to this wonderful economy so that is why we are uninsured and also, I believe that is why my symptoms have begun. Good old stress.

[tarnalberry]

a "slightly positive" celiac blood test is like a "slightly positive" pregnancy test. it's POSITIVE. (my frustration is entirely at your doctors who have strung you along and toyed with you.)

[mom2easton&eli]

Thanks so much for your reply. It is very frustrating. Especially knowing we had our answer 3 years ago after trying to do everything right and were given the run around. The last 3 years have been difficult behavior wise and potty training...that's a whole different story. To think that we could have just enjoyed our child and had peace. I think I will just use that test as my positive test that I need in order to get friends and family to take it seriously.

[ravenwoodglass]

I think your plan to go gluten free for both of you is a good one. He had issues and a positive blood test, you saw great improvement on the diet and when you put him back on gluten his problems returned to such an extent that even a 5 year old was able to see the difference. I would do as you plan to do, get him back off gluten and give your family back your quality of life.

[taweavmo3]

I am so sorry you've had to go through so much with your son! I agree with Tiffany, positive is positive. Unfortunately, many of us here have experienced doctors who've had less than adequate knowledge in regards to Celiac. Combined with your son's symptoms, I think you have your answer already.

I have one daughter who tested positive by biopsy, but I have all my children on the diet. I still question myself from time to time, especially when family ask questions, but I know I'm doing the right thing. They have been so much healthier and happier gluten free (and dairy free), and all but my oldest haven't even needed to go to the doctor at all in the past year. Even though this diet can get pricey for a family of 6, I figure we still come out on top b/c we have eliminated all medical costs, other than well child checks.

The other motivating factor for me is that other auto immune diseases can occur as a result of untreated Celiac. My 10yo son has psoriasis, and was just recently diagnosed with juvenile arthritis. I only wish I had known about the diet earlier for him.

Go with your gut instinct on this one....your son has a positive blood test, you did what you could with testing, now it's time to just get healthy, for both of you. I went gluten free with my kids, and many symptoms I had for years were gone. Now it's just a way of life for us! Good luck.

[siligurl]

I'm new on this board, and have lurked for awhile since I'm still straddling the fence on what to do about me... BUT... I'm a mommy too of a 3 yr old, so I can more than appreciate your frustration, worry, and concern for what to do for your son. Since I have celiac/gluten sensitivity symptoms, I worry about putting my family-- at least at home-- on a gluten free diet for no reason (i.e., my blood work was inconclusive and really only showed IgA deficiency).

With that said, I think his reaction to a gluten free diet is proof enough. Most people on this board have told me that if I need a doctor's diagnosis to feel good, then to go for that, but that otherwise it is perfectly fine to GO WITH YOUR GUT, or in this case, your son's. For myself, I can tell you that I am 35 years old and feel g-dawful, and have for years, and doctors can't find anything wrong EXCEPT that now I have hypothyroidism and early onset of arthritis in my spine. Oh-- and I've lost my gallbladder, something which is relatively unheard of since no one in my family has gallbladder problems.... yet would be perfectly consistent with celiac's. The point is-- it's better to be safe than sorry. If you "know" there's an issue, don't wait for the doctor to confirm it. For what it's worth, I'm a big believer in mommy instincts-- listen to them.

G-d bless you, Jennifer

[Darn210]

Just for your records, I would get a copy of your son's tests from when he was two. Along with a copy of his tests, I would document the approximate dates that you removed the gluten and his changes in his behaviour and potty issues. I would also add the dates and redevelopment of issues during your current gluten challenge. Also be sure to throw in the growth changes. Then just store it away.

Once insurance has been restored, if you want to visit a GI for an official diagnosis, you may not even need to do anything other than show the old test and your documentation. I know that my daughter's GI would have taken a positive blood test and positive dietary experience as definitive enough for an official diagnosis but I will also throw out that there are many GI's that will want you to go through it all again so you may need to shop around. Or skip the GI and just keep the info for yourself and for your son if when he's older he starts to question his diet.

Good luck with your son, your diet and your husband's job search.

[Laura333]

I agree with Janet; I'd try to get copies of the old test results, including the endoscopy/biopsy reports. Depending on which test was "slightly positive," that may be enough for a diagnosis by some GIs, which could help you in the credibility department with other professionals, not to mention family members. And, a firm diagnosis might be helpful in the future for other assistance as well, deducting on tax returns, etc. But, in the meantime, I'd certainly remove the gluten since you KNOW it helps him! If you didn't have the insurance issues, I'd say retesting now first; but, if you won't be able to do that anytime soon, I'd remove the gluten now so your son will feel better NOW!

That said, I know how hard it is to struggle with the question of "is it or isn't it gluten causing the problem(s)"...

My DD is 6, also had "slightly positive" bloodwork at almost 2 (only the antigliadin IgG and IgAs, but they were super high), negative biopsies (they took 3). But, even our GI at the time, who was as dismissive as they come, said it was still possible that she had celiac and that they had just missed it with the biopsies they took, since it is a patchy disease. He didn't have a problem with us trying the Gluten-free Casein-free diet, saying it was a "healthy" diet, but he wasn't supportive either. Four years later, I KNOW we did the right thing removing gluten (for many, many reasons, but that's a long story!)...she tests positive for allergens such as corn and milk...but I still feed the nagging need for "proof" that gluten is a problem.

[JillianLindsay]

I agree with everyone and am sorry you and your son have had to go through this. People of every age and with varying symptoms can have false negative tests, so as much as we all desperately want a definitive answer, it is not always possible. Also, once your son is an adult (or old enough to decide for himself and buy his own groceries), he could always go off the gluten-free diet for 6 months and get re-tested if he wants confirmation that he should be on the diet. For now, his health, bowels, behaviour, etc. are all showing you that he is healthier and happier being gluten-free Good luck whatever you decide to do!

[daphniela]

If your uninsured and low income you should be able to get medicaid through your state health department.

My blood test came back barely positive and my doctor told me to go gluten free. I probably was barely positive because I never cared much for bread and rarely eat it. So there was not probably much gluten in my system.

[siligurl]

He didn't have a problem with us trying the Gluten-free Casein-free diet, saying it was a "healthy" diet, but he wasn't supportive either. Four years later, I KNOW we did the right thing removing gluten (for many, many reasons, but that's a long story!)...she tests positive for allergens such as corn and milk...but I still feed the nagging need for "proof" that gluten is a problem.

To you mind sharing the "many reasons"... I don't mean to pry, but it might be the encouragement I need to jump into the gluten free diet which scares me.

Thanks,

Jennifer

[mom2easton&eli]

Thanks all! I knew I could get better info here than from anywhere else. I don't fully understand the different tests and everything but my hubby just picked up the records from the Dr's office. He's not home yet but I'm antsy to look over it. I might have more questions when I get the tests in my hands. I know there are tests that can be false positives and what not so I'm sure I'll be back on here in a few hours. Thanks again for all the support.