Overreacting?

[melblondin]

Hi everyone-

I just want to introduce myself/family and see if anyone else can relate.

After my 3rd pregnancy I was diagnosed with hypothyroid and a wheat allergy. I avoided wheat on and off until recently when I decided it's for real and I just need to stay away from gluten for good. Some of my symptoms were asthma attacks, joint/arthritic type pain in my hands especially, headaches, fatigue, depression/irritability, severe constipation, brain fog, itchy dry skin,etc. Many of those symptoms are consistent with allergy and hypothyroid, but I'm wanting to make sure that it stops there and isn't also celiac because of what I've seen with me and in my boys.

As for the boys, my 3 and 5 year old both had diarrhea/loose stools for about a year straight (which has since gone away), they are both in the 3rd to 5th percentile for growth, they both complain of frequent tummy aches, and my 3 year old has very dry skin. His face is always red and inflamed after mealtime, the tops of his arms turn bright red intermittently and they have little bumps all over them. My 5 year old used to get eczema from his bottom to his ankles, but seems to have outgrown that somehow. I don't know if the 3 year old will outgrow his issues as well or if there's more to it than that. The 3 year old also tested borderline for celiac when he had bloodwork drawn a year ago and he had actually been off wheat for awhile before the test, so I don't know. My thought is to get him retested at his well child next month to see what's been going on with those numbers in this last year. Does anyone else have children who had chronic diarrhea and eczema that eventually went away, but who still have celiac or does this sound more like allergies that have been outgrown??

I also have an 8 month old son named Caleb who has severe reflux, skin rashes, gassiness and constipation when given solid foods and I just found out that he has dropped from the 75th percentile to the 10th percentile in a 5 month period of time interestingly enough after solids were introduced. So I don't know what to think.

I asked to get myself tested for Celiac by the genetic testing because I have been off gluten for 2 weeks already and don't want to go back on. My doctor ordered the blood panel and the gene testing, but it doesn't look like our labs do the genetic testing and I don't think the blood testing is going to be all that reliable since I haven't been eating wheat.

It could all just be allergy related or things that will take care of themselves with time, but it just seems odd to me that so many of us in my family are having similar symptoms. I guess I just don't want to miss something if it's there and I can help my boys to grow well and to feel healthy.

[Mac55]

I definitely don't think you're overreacting. I would get all your children tested. Follow your gut. You know there's something going on and you know how much better you feel not eating gluten. Have you looked into Enterolab testing for yourself?

My older son spit up ALL the time. When I say spit up I don't mean a little or just after meals. He wasn't put on meds until 7 1/2 months. He got a lot better but it didn't fix him. He just turned 4 and he's still on meds for reflux. He's had reflux, speech delay, constant ear infections, sleep apnea, attention issues, congestion his entire life. It wasn't until I was diagnosed with Celiac that I took my boys off gluten. It's been a miraculous turn-around with him. Most of his issues have disappeared or been greatly reduced. He also had a weird rash all over his lower torso, bum and upper thighs. It just got worse until we took him off of gluten then cut out all dairy. He was tested for Celiac at 2 and it was negative. I wish I had tested him again before I took him off gluten. We did order the gluten sensitivity tests for both our boys through Enterolab and are waiting for the results.

I'd definitely start with the Celiac testing and then you can do allergy testing as well. We just did that for my son too. They did blood work first for a lot of foods. If they don't get much info from that they'll do the skin test.

I've always known there was something going on with my older son. It's taken so much digging to get to the root of the problem. We're not there yet but we're on the right track. The best advice I ever got was to trust my gut. A mother knows her child best and knows when something isn't right. Keep digging. You'll get there.

[melblondin]

Thanks for the encouragement!!! My gut certainly says that something isn't quite right, but it's hard to press on sometimes, especially when family members think I'm crazy and just "looking for something to be wrong." Yeah - I can relate to the spit up. Our little one spits fountains from one feeding to the next and that's like a 4 hour time span between feedings. We've said that if we can get him through this, we're going to have to hire a professional carpet cleaner. He hasn't been on gluten per se, but I'm interested to see how he reacts once all the gluten gets out of my system. I'm wondering if the spit up will slow down.

As far as I go, I'm in the process of trying to get a referral through my doctor to test at Prometheus labs for the genetics. I'm hoping to get that taken care of this week and get tested as soon as possible. My 3 year old has a well-child at the end of the month, so we'll rerun his bloodwork at that point and see if anything is going on.

Sometimes it seems like such a wild goose chase trying to nail it all down. Two night's ago my 5 year old broke out in eczema again and then by morning it was gone. So weird. I have to believe a food of some sort is at the root though. We'll keep digging until we figure it out. I'm very thankful to be on this board around so many others on similar journeys!

[Mac55]

I know it's hard but don't listen to people that say there's nothing wrong with your child. I had that too. I was just talking to my husband about that last week. I would say things to others in the past like he's sooo active, won't sit still, doesn't seem to hear me when I'm talking to him, etc, etc, etc. People would say things like, oh all children are like that, it's just the age. It wasn't. It was the food he was eating. Most parents don't know what it's like not to be able to have a conversation with their child, to have him look right past you while you're talking to him, to be so tired he would meltdown constantly, to have so many vague symptoms that most doctors can't put together. It was so upsetting my heart hurt for him. He was a lost little boy until we took him off gluten and dairy. He's now present and can talk to us, not to mention sleeps better, congestion's mostly gone.

It's so incredible that most of our issues and problems have been caused by food we've been eating. What's more incredible is that I've had to figure this out all on my own. It's pretty sad actually that I've gone to doctor after doctor after doctor for myself and my son and we haven't had this addressed. Most doctors look at one symptom and try to treat that, mostly with meds. They don't look for the cause. I didn't want to put my son on any more meds or have him have any other surgeries if it wasn't necessary.

I'd love to hear how everything goes with you and your kids! Keep strong and fight for what you know they need. Don't listen to those that tell you you're wrong. Even doctors aren't always right. I literally just had our ENT/allergist who did the testing for allergies tell me it was okay to do the Celiac panel now even though he's been gluten free for a month+. Hmmm, no. We didn't get that test done. I know better. Good luck. Stay strong and arm yourself with knowledge!

[melblondin]

I'm so with you on trying to figure out the root cause of these issues instead of just covering them up with meds. I also feel like I've been on my own for the most part doing the research and trying to piece it all together and push for different tests and things. I'm anxious to get to his well-child check-up so we can get the ball rolling and figure this all out. He left the dinner table early again today at lunch complaining of a tummy ache and then took a 3 hour nap and also had 3 potty accidents. I just can't believe that that's all coincidence and/or unrelated. I think if the celiac testing comes up clean, then we'll look into allergy testing as well because I know something is going on, especially with him not growing very well either.

That's great to hear that your little one is doing so much better. It's so crazy to me that a seemingly harmless thing like food can end up causing so many of us all these problems!!! I'll definitely keep you posted. As far as I go, I'm just waiting for my referral for the genetic testing to make it's way through the insurance co. Hopefully by next week, I'll be able to go and get the blood drawn. We shall see...

[homefront]

I agree! I don't think you are overreacting at all. My 10-year-old daughter screamed from birth until she was 2. She quit growing for about 6th months - had been above average and went to 10th percentile. At that time, they didn't have the blood test. They did a stool sample. It was negative. So her doctor decided on "slow digestion". Finally, when the stomaches just didn't stop, we went back to a specialist last year. One blood test later, we found most of the problem. We are now struggling with some of the stomache aches coming back, but at least she's growing better (gained 10 pounds in less than a year so far). The only thing is that they have to be on gluten to have an accurate blood test. And I would want an accurate blood test before proceeding with an endoscopy. (My daughter didn't do well with it.) But she had lots of skin problems, thin hair, dental problems, then nails. It has explained so much for me.

I had a blood test run because I have IBS. Mine was negative. Her older sister has Juvinile Arthritis. I have a 1 year old now with my 2nd husband. He has skin issues, but otherwise has been fine. Maybe my first husband's genes and mine didn't go well together? But I totally agree - go with your gut. I just wish we had pushed it earlier. My daughter hates being smaller than everyone else.