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I Am A Little Freaked Out By What Im Reading

hungryforlife

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hungryforlife Apprentice
hungryforlife
Posted

I found out this past summer that my brother was diagnosed with Celiac Sprue and after researching it have questions about my own health. (posted on appropriate thread) But, as I keep reading and having more questions and receiving more information a light bulb has gone off regarding my four year old.

He was diagnosed with having a fistula (on his bottom) when he was 8 months. He had surgery to correct it. His pedi at the time had told me that when he was older we would look at Celiacs, because fistula's are common in celiacs. His surgeon said no, babies just get them. We have changed pedi's (I loved the old one, but honestly could not deal with the office.) At the greet and meet with the new pedi, I brought that up and she didnt seem concerned. Her comment was that Dr. B knows a lot. (I wondered at the time if that was a polite slam.) Anyway. I have taken my boy to the new pedi at least once because he has instances of awful pain in his stomach. She couldn't find any reason for it and assured me that it was nothing because it was not sidelining him. He is a go getter anyway, honestly pain wouldnt slow him down He's four! I have also been to her office serveral times because of allergies. (none specific, but clear runny nose... that left unchecked moves into his chest. She is contemplating diagnosing him with ashma (sp?) She lists it as bronchitus each time (he now has a nebulizer and does breathing treatment when it gets bad)

My son is very bright and he gets the joke and he can respond and interact, but at times I have said it is like he a child with autism. Like he as problems focusing. I will say something and sometimes I will have to get him to look at me for him to register. I pass that off as him being four and to busy to listen to mom. Also, at times he just goes and it is like he cannot stop himself. I pass that off as him being over tired. I just read on a previous post about someones child eating constantly. My son eats CONSTANTLY!!! and has BM issues as well. Sometimes even green stools.

Now, I have questions. Especially in light of my own probability of having gluten issues.

I just think that this is to coincidental to be coincidental?

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Guest nini
Guest nini
Posted

I think that you and any children of yours do need to be screened for Celiac... and at the very least TRY the diet and see if it helps.

My daughter was dx'ed solely by positive dietary response and the fact that I have Celiac. Her ped. was supportive, but the ped. GI refused to believe me and said it was just IBS (In a 3 year old???) My child is a completely different child off of gluten. I wrote an article about her experience if you would like to read it, e-mail me at nisla@comcast.net and request Chey's story...

VydorScope Proficient
VydorScope
Posted
I found out this past summer that my brother was diagnosed with Celiac Sprue and after researching it have questions about my own health. (posted on appropriate thread) But, as I keep reading and having more questions and receiving more information a light bulb has gone off regarding my four year old.

Thats the only part of your post you needed to say realy. :) Based on that part, you, your son, and any other childern you might have, AND any other siblings you might have, should be screened for Celiac. The rest is just added reasons to get tested. :)

celiac disease is gentic. You did not catch it from some random person, your parents gave it to you. Wasnt that nice of them? :lol:

elfkin Contributor
elfkin
Posted

Sounds VERY suspicious to me! I would check into it, do a dietary challenge, or testing, or whatever. It does sound like it could be a gluten problem.

Rusla Enthusiast
Rusla
Posted

I am going to say something you may not like. Dump this pedi, go back to the old one and just ignore the office staff. Which is more important, your sons health or dealing with office staff.

Sagesmama Rookie
Sagesmama
Posted

Just in the past few weeks... I've had so many "lightbulb" moments about my sons health and my health that I could light up a friggin Christmas tree :lol:

All kidding aside... I've learned just how complex this disease is and how even minute "complaints" can turn out to be small "indicators" of celiac disease.

Whatever you decide to do is always in the best interest of your child- so for anyone to challenge your intentions sounds heartbreaking to me :hug:

As far as behavior goes... my son was sent to a psychiatric hospital for a two day evaluation by his pediatrician because his behavior was so "off" :unsure: It makes me so sad that we put him through that and at the time I wish that I would have insisted that they look at his diet through bloodwork first. In the end, the hospital ended up "diagnosing" him with "anxiety" which we now feel was pulled out of thier you-know-whats...

Mama instinct is usually right on... you just sometimes have to block out the words of the world and look into your childs eyes to see what's really going on....

ryebaby0 Enthusiast
ryebaby0
Posted

My personal soapbox issue --- when my son was 4, he was sent to specialists because of constant constipation. We had noticed he didn't "do" dairy well, and remembered as a baby switched from the breast to bottle, he cried and scrunched up a lot.... But it seemed to resolve, and on we went, with some sporadic problems. Nobody ever suggested celiac disease. And then at 10, he became so profoundly ill he ended up hospitalized for 2.5months, his GI system completely ravaged by untreated celiac disease, his joints inflamed, unable to walk, and malnourished like a famine victim. It took him 4 months to be able to walk around the block, his body had burned up every single muscle cell it could find in an attempt to "feed" him.

Diagnosed, treated, fed properly, he gained 40 pounds in a year (he only weighed 47 in the hospital; nearly 25 pounds underweight). He's just fine now, perfectly recovered. Don't wait, don't let this happen (and admittedly, we're an extreme case) to you. My husband's years of food intolerance, and his father's, were all explained by bloodwork--- they are celiac as well...

Good luck. Your instincts to pursue health for your child are good ones :)

joanna

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sparkles Contributor
sparkles
Posted

Find a doc who will listen to you. Celiac's Disease in children is nothing to fool around with. I would rather be safe than sorry. Unfortunately, only a biopsy done with a camera to guide the biopsy will show the damage to the villa. A biopsy without the camera is based on dumb luck as to whether the doc hits the villa that is damaged. And, unfortunately, once on a gluten free diet, a correct diganosis is really hard. But find a doc who listens.... a mother's intuition is usually right especially when it is in the family.

Guest Robbin
Guest Robbin
Posted

I totally agree with the previous posts. GET TO ANOTHER DR. FAST. When you describe your son, it is like a description of my oldest --couldn't get drs. to listen to me-they said "behavior problems" He ended up with juvenile diabetes at age 9 which I know now was a result of celiac. Mothers just KNOW these things. Find someone to listen to you. Also your hubby sounds like my EX husband. He now has health problems and I SO want to tell him it's all in his head, but alas, I am too nice(!). :blink: Plus my son, now 21 lives with him so I have to be nice! :) You can always come to this forum for support when you need it.

lamood Newbie
lamood
Posted

I agree with what everyone is saying.My daughter had to go through a year of pain before they would scope her and find the colitis. I can not believe what they expect little ones to go through. They would never tell an adult to deal with daily pain and bloody stools. It is awful. I finally went to a specialist pediatric GI, of course the doctors didn't feel this was necessary.

Do exactly what you think. I have found that the "squeeky wheel" gets the most done in this case. It was hard for me to be more assertive, because I am normally passive. But our children need us.

Good luck!

Heather

Sadie Newbie
Sadie
Posted

Hi. Your story sounds very similar to mine.

I just wanted you to know that my sister was just diagnosed with Celiac Disease (at age 30.) I got tested and came out negative...but my 5 year old daughter was complaining of stomach aches for months so we had her tested...and guess what...she was positive for Celiac (through positive blood work and an endoscopy.)

My sister's GI told her that EVERYONE in her family should be tested (mother/father/sister/brother) so you definately should be tested as well. Because my daughter is positive, her brother and father were tested as well. Everyone else is negative...but as you can see, the Celiac gene can skip around in a family.

Definately have your son tested...at least you'll know for sure. And don't put him on a gluten free diet before the tests are run...

hungryforlife Apprentice
hungryforlife
Posted
  • Author

Thank you all for your words and insight into this issue.

In the back of my mind I have always had the celiac comment (from the former pedi) in my mind, but never corralated it to the present. And never even pursed it with the new pedi, except for bringing over the comment when we switched.

I trust that I would make immediate changes if I felt that the pedi was not listening to me on any issue.

Rusla - I have thought many times about going back to the old pedi's office, and may should I feel that my current pedi was not an advocate for her patients. BTW, the office issues are major, but not the only issue. Dr. B would only want to see the patients with "Problems" and the others could wait in the waiting room, then the room for hours, literally. Last time I was there I was there for three hours, one in the waiting and two in the inner room with a sick three year old. It was NOT Fun. Then when I stepped out to get fresh air, ALL of her office staff had left for the day, five oclock on the dot. She came out of a room and was calling one for help and they had all gone? very odd. AND yes they knew I was there because I always leave the door open until the dr comes in.

Anyway. Half of our church preschool use this specific pedi because she will go the extra mile to discover what is wrong with one of her patients. She is very sharp and very diligent. The problem has been that I never put one and one together (for me or for him) until I started researching celiacs as a last resort for myself after I found out that my brother had celiacs and the same issues I have been having.

That is why I am so OMG about this. My son is sharp. His older sister is Very Gifted and a very bright 12 year old. I didn't want to compare him to her, so just thought that he was who he was. Our situation is different than when she was little and now we are all about fun and laughing. He is a very sweet boy and loves to have fun and laugh, not so much with the learning like his sister always was. And his heart hurts easily if anyone hurts. You would never think he had any issues. I just didnt want to compare them, so just let his personality be what it was.

But ya'll are right, a mom's intuition is usually right on. And now that I am looking at the past through "possiblity" and added information lot of things fit. I will mention my concerns to my GI and after my appointment I will take him to the pedi and pursue this on his behalf. Then we will just wait and see.

happygirl Collaborator
happygirl
Posted

come armed with information-TELL them you want the celiac blood panel run. Come with the names of the tests. otherwise, they might give you the run around!

hungryforlife Apprentice
hungryforlife
Posted
  • Author

Laura

Isn't that the truth. I found that out on Feb. 7th.

I thought that since I said I wanted to be tested for Gluten Intolerance because my brother was diagnosed with Celiac Sprue that he would order the panel. He did not! Just IGA/IGG. I found out today that my brother's body doesn't even produce IGG?

Next week I will be armed!

VydorScope Proficient
VydorScope
Posted
Laura

Isn't that the truth. I found that out on Feb. 7th.

I thought that since I said I wanted to be tested for Gluten Intolerance because my brother was diagnosed with Celiac Sprue that he would order the panel. He did not! Just IGA/IGG. I found out today that my brother's body doesn't even produce IGG?

Next week I will be armed!

Unelss you get at least four of the tests down you do not have a very good chance at getting a reliable answer, IMO. My son only scored a postive for celiac disease (but it was a STRONG POSTIVE) on one of the secondary tests. My self only had the 2 "screening" test, and neither of them was I postive on.

I would get them the full celiac disease panal if you can, and the very day you get that blood drawn, put everyone on the gluten-free diet and start taking notes. The diet is often the most reliable means of diagnoses and you do not need any doc to help you.

Thats just my suggestion, and what I would do if I was you. Good luck with your doc when you see him (her? ) next! :D

happygirl Collaborator
happygirl
Posted

hungry-do you have the name of all the tests? I think there are five total.....Let me know if you need them.

Rusla Enthusiast
Rusla
Posted

Geeze, I can relate to the sitting in the doctors office for hours. I used to have a doctors appoint with a previous doctor. It was booked for 9 am, I had to book the whole day off work because I would never get in till 6 pm. I figured it was maybe snotty office staff you were having problems with.

You have problems, a doctor that doesn't care and the other one who makes you wait most of your life. It is important to get your son diagnosed. Could you possibly call the old docs office, leave a message saying it is very important that he call you back. Then embellish the problem so he will see your son sooner. Of course with this disease no embellishing is needed. Either that or searc for another doctor and that is also difficult.

hungryforlife Apprentice
hungryforlife
Posted
  • Author

Another diagnosis in the family.

This weekend my husband's sister and brother-in-law were in town. He came over for a while and we served cheese and I served both triscuits and gluten-free crackers (Blue Diamond smoky --yummy btw) He commented on the gluten free crackers and we discussed that I thought I may be intolerant. He talked that his son is gluten-free. (My husbands nephew)

I spoke with my sister in law about it and yes he if gluten-free. She thinks it is from her husbands side though, but I have had many many conversations with my husbands mother about her own digestive ailments, and going to the doctor getting different test and such, they have never found the cause. She assumed it was something they put on the salads when she goes out to eat, as she always gets sick after?

So now I have my brother, possibly me and now my son's cousin with celiacs. I am making an appointment with the DR. to discuss this!

The poor boy said to me last night, mommy I wish my nose and cough would clear up. He has been stuffy for ever, they said it was allergies and prescribed breathing treatments and antihistimines.......but, now I don't think it is envoronmental at all.

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