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Eeyorific

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Eeyorific Rookie
Eeyorific
Posted

Hello everyone,

(I will try to make this as brief as possible)

My name is Kristie, I live in Central Illinois with my hubby, (Denny) and our two children... Emelia (dd, age 9) and Matthew (ds, age 3)

I'll start with Matthew. Shortly after birth, Matthew's problems began. He lost weight... alot of it! Malabsorption, Very fussy, distended belly, horrible dirrhea, We're talking a average of 20-40 a DAY! Despite my massive efforts to hydrate him,. we ended up in the hospital more than a few times for dehydration.

He has had two ear infections which they treated with antibiotics.. Matthew became VERY ill on both of them (two different antibiotics) In hindsight, I believe it was because his lil body was fighting so hard against the gluten, when we took the good bacteria away, the poor guy didn't stand a chance. Again both times, he was admitted in the hospital.

When he turned two, (after much research) I requested that he was tested for celiac disease. I asked this of his Pediatrician, whom I trusted more than the GI doctors. His IgA Anti Gliadin was positive at 30. However, because she didn't specialize in this field, she referred us to a GI in Chicago, who later dismissed the test findings and dx'd him as having "Diarrhea of Infancy"

Exactly a year ago, Matthew was very ill with Croup. (he would get this often) we took him to the ER 3 different times within a 2 day period because he was having such a horrible time breathing, they gave us steroids (as they have many times before) and sent us home... with in 3 hours he had a 105 fever and was retracting so bad that it appeared he didn't have a front chest, it was sunk clear into his back. The paramedic in the ambulance on the way to the hospital said he was just moments away from his system shutting down. (this was on Oct 31st) He spent 3 days in the hospital

At this point, Mommy took matters in her own hands, and did all of the research she could on celiac disease and a Gluten free diet. (he was also CF from very early on, from my own doing... being CF seemed to help.. a little)

After 3 days on a gluten-free diet, he went from 30 diarrhea's to 10.. 5 days later, he was down to 2 normal stools. And unless he is accidently glutened, 2 normal stools is average for him. Also, he hasn't seen a hospital bed since that horrible day a year ago! Nor has he been back to a GI doctor. (I apologize if I seem a little bitter towards the medical profession, if it wasn't for the ER staff, I wouldn't have my son today... I am very grateful! I do, admittedly have frustration for the lack of awareness and teachings towards celiac disease. I pray by the time my children have children, this will have improved greatly!

I am also happy to report, that last month was his 1st recurrence of croup, it came and went with no problems at all, we didn't even need the use of the steroid (Thank God! He reacts horribly on them!)

Recently, we talked again to his Ped about getting an official dx of celiac disease.. she too believes he is Celiac but claims the dx must come from the GI. However, she did agree to test him genetically... He came back positive for HLA DQ2 but negative for HLA DQ8. he also came up positive for one split of DQ1 which was DQ6. She shared this information with the GI doctor (not the one from Chicago) but he claims that in order to dx him.. Matthew must go on gluten for 4 months then perfrom a biopsy :angry: I'm sorry... I will not subject my son to that once more.. If he even has jelly that is made on the same machinery as gluten, he reacts horribly! We will just have to deal without an official dx.

Now on to daughter.. (sorry, I know I said I would try to keep this brief)

Emelia's symtops have been quite different. I want to add, her symptoms mimic exactly my own!

She has had chronic constipation from very early on! At the age of two, she was in the ER from her belly being so distended she looked as if she was 9 months pregnant. They had to give her 5 enema's that night. Her colon was stretched 3 times of normal size!

She has probably had over 30 enema's within one year. She was on laxatives for the 1st 5 years of her life. Since then, we give her very high fiber foods and one huge glass of apple juice a day. She still is very constipated and bleeds most every time she has a bm (sorry if this is TMI)

Her other problems are... asthma, exzema, had tubes put in age 6 months, despite being breastfed for the 1st 9 months. Has had alot of trouble with Strep throat and very enlarged tonsils.

Her symptoms now are... problems with hair loss, chronic fatigue, irritably, forgetfulness, and as always constipation.

She is seeing a new GI doctor on Tuesday, we haven't seen him before. However, he is the partner of the GI doc whom Matthew has seen once, and suggested he go on the gluten diet for 4 months to get proper dx. I am PRAYING hard for better luck with my daughter. Despite what he does or doesn't find.. she IS going gluten free, and is very prepared to do so. As we did a *test* for 3 days.. she herself noticed much improvement.

The only reason we are following this through with a specialist, is because we know too well if we don't have a biopsy now while she is on gluten... we will be in the exact same position as we are with my son. *sigh*

Oh.. I almost forgot, we had her tested as well through blood work, the ped did not do the IgA this time but did the TtG instead.. hers was negative. However, she also tested her genetically.. and like her brother, she was positive for HLA DQ2 and negative for HLA DQ8

If you are a person of faith, please pray that this appt goes well for her.. we really need a positive dx.. or at the very least for them to agree that my children are Gluten sensitive, I would even be happy with that!

For those of you who are still reading this *book* :) I too am going gluten-free along side my daughter the day of her biopsy... if they agree to do one.

I am a little worried about dealing with the schools if we aren't able to get a dx. However, I have spoken to her teacher, and she is very supportive. It will help for this year at least.

Thank you for letting me share our story!

God Bless,

Kristie

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jrom987 Apprentice
jrom987
Posted

Kristie!

Wow! You have been through so mcuh! I have had some of the same symptoms most likely for my entire life (my son also has some of them). I am now 46 and was just dx'd with celiac disease. I am trying to get my 23 yr old son to be tested but ... that is another story.

What I want to say is KUDOS TO YOU! You are a really good mom and I love hearing that you won't give up. You children have been through a lot! Now, they can start to heal and not have to spend years and years wondering what is wrong with them.

Of course, it is up to you but I agree that you shouldn't put your son back on gluten just to prove he has an intolerance to it. You have the proof right in front of you.

Good luck to you and your family!

Jo Ann

Guest nini
Guest nini
Posted

Welcome to the board. My daughter's GI also refused to give her a dx of Celiac, despite the fact that I have it, AND she responded so positively to the diet. I will not ever put my daughter back on Gluten ever...

Her pediatrician at the time said that we will call it "gluten intolerance" in her records. The most the GI would concede to was IBS... The pediatrician said "well WE KNOW it's Celiac" and since the only treatment is the gluten free diet, just keep her on the diet. I absolutely refuse to put her back on gluten for a gluten challenge and biopsy. SHE refuses to go back on gluten because she knows how terrible she feels when she is on it, and how great she feels now.

My hope is that one day the medical community will catch up with those of us who have to live with this, and one day they will step outside of their little box and concede that they don't know everything about it and that improvement on the diet should be considered a valid test result.

jadobson Newbie
jadobson
Posted

Never go against yourself. You do not have to have him go back on gluten. My son had troubles too, not as bad, but troubles. We have been gluten free for 5 years (now 78 pounds heavier). We too didn't have the greatest set of GI's. It was my insistance to vist an endcronologist who caught what 3 GI's hadn't. He too had pos. high antiglidin antibodies and DNA tests. The GI wanted to do a bio. I refused due to the fact we dont' react normally to anesthia and why put my baby through yet another very invasive test if changing his food works. After a few years of him benefiting from the diet, they determined him to have celiac based on positive diet change as well as they then also took into consideration all the other tests. Go with you gut and do what you think is best. They can and do dx just may take a few more years to label him.

Keep you chin up, your doing a wonderful job.

Ursa Major Collaborator
Ursa Major
Posted

Kristie, you're doing the right thing. Putting your son back onto gluten just for their dumb test might kill him!

Sounds to me like your home will be a happier one if it's totally gluten free.

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