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New And Pretty Scared

Terrified Mom

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Terrified Mom Newbie
Terrified Mom
Posted

My son is almost 3 1/2 years old. He's been on a dairy free diet for 2 years now, as best as I can manage since his father (we're separated) refuses to believe it and continues to give him dairy when he has him, even though our custody order actually forbids it. Wonderful daddy actually sent me a picture of his Easter basket with Kit Kat bars in full sight. *sigh* My son tells me all the time that daddy lets him have Cheezits, daddy lets him have cheese, daddy lets him have ice cream (and trust me, daddy isn't paying $5 for a pint of coconut milk ice cream!).

Recently I just on a whim decided to read about celiac disease. The more I read the more convinced I became that he has it. For one, my husband is 6'5", I'm 5'7", most of my cousins are tall (one that even my husband looks up to!), and our son used to be 75% for height for his age. Now he's 10% which has him barely reaching my height as an adult if he were to stay on that curve. He has always had bowel problems, which were improved somewhat by his part time dairy free diet. He has one patch of eczema that is clearly related to dairy. He has horrible gas. It REEKS. He's also had a sudden appearance of psoriasis over the last couple of months.

His pediatrician got concerned when I pointed out to her that he has slid down the growth chart (isn't it HER job to notice??) and sent him for the blood test. I tried to get him to eat as much gluten as I could over the weekend before the blood test, but, of course, he refused it all. Not even his without fail favorites, PB sandwiches or chicken nuggets, would tempt him. It's almost like he knows. Blood test=negative. I was not given any numbers.

At the return visit to the ped I convinced her to prescribe a gluten-free trial. After a 3 month trial (not long enough, I know) he'll be referred to the gastro if there is no improvement. She typed up a letter for his father stating a gluten-free/dairy free diet for 3 months. I told him he would be referred to the gastro for a scope if there was no improvement, so I pray he'll take it seriously this time.

Thankfully, I am still nursing my son, but after reading some of the posts here about celiac induced lactose intolerance, well, I'm still glad I am, but at the same time wonder if MY milk is causing some of his problems. The ped said it's highly likely if we weren't still nursing he'd have been failure to thrive by now (she is amazingly supportive of extended nursing). That's even scarier than the lactose. At least he is probably able to absorb some nutrients from breast milk even if he can't from food. I've also noticed that he is nursing nearly as much as he did when he was 9-10 months old here in the last 6 or 7 months, and I wonder if that's related, too. Of course, this means I have to stick to the diet as well, but the more I read the more I wonder... I was diagnosed with moderate to severe ADHD about 10 years ago. If I cook a steak at home, I have no issue, but if I have one while dining out... I better get home quickly. I definitely noticed major improvement in my sense of well being once I went dairy free (no more constant slightly stuffy nose, and no more stomach discomfort I hardly noticed before since it was so "normal" for me). If I slip now I pay for it with stomach cramps pretty quick, and a stuffy nose the next day. The stuffy nose isn't bad, but it's really annoying now that I've experienced true clear breathing for a good while.

After 4 days gluten-free his gassiness was definitely improved. My sitter slipped and gave him a couple of biscuits and it came back. His behavior that night was absolutely horrible, too. "Nanny" watched a movie a few nights ago about a woman who had Celiac and now I think she understands the importance of maintaining his diet. That said, if there are many more slipups (he got a cookie today and is now in my lap farting in his sleep, and he was very testy earlier, again) I will have to consider moving him. She saw first hand how a dairy slip up at lunch would have his eczema raging by the time he woke from his nap, so I'm having a hard time understanding why it's so hard for her to remember his restrictions.

My mother has severe IBS, which I'm more and more convinced may be celiac disease. My brother has psoriasis, that doesn't look like psoriasis that I see in pictures. Actually looks more like eczema, I think. He's my room mate, I do all the grocery shopping. When I've refused to buy milk, I swear his skin looks better. For the last 2 weeks I've been cooking gluten free, and I swear it looks better still. My 14 year old is tall, very close to 6', but very scrawny, as I was up until the last few months of eating pretzels at work all day, sure do miss those, and I'm 34 and have had three pregnancies! His bowel movements can clear a whole house. It's REALLY bad. My sister has dealt with gastro problems her whole life, and after baby #4 is still scrawny.

Part of me wants to call off the gluten-free trial and send him straight to the gastro, but a slightly larger part of me really doesn't want to put him through that if I can avoid it. I also really don't want to face the possibility of him going through it twice, either, if he's been gluten-free too long for it to be worthwhile the first time, so I'm really torn on this.

My aunt has told me about a naturopath about 2 hours from here. I'm a pretty darn natural minded person and was absolutely thrilled to find out that my aunt is, too. She's been seeing Karen Hadley (Jackson, TN) for decades, and has been able to amaze doctors by having her blood pressure, cholesterol, etc., corrected without meds. She was telling me about some detox that Hadley does, and she reads the results? I haven't been able to find out exactly what that entails online. I've heard of detox, but never anything about results that can be read. Anyone?

So, that's it in a (big, huge coconut) nutshell. I know I'm missing some details that I meant to write about, though. I am still "ADHD". ;)

So, what are your thoughts and WWYD?

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mushroom Proficient
mushroom
Posted

Hi, and welcome to the forum, Terrified Mom. Hopefully you will find this a place of information and reassurance.

I am not an expert on infants, but from what I have learned here celiac is notoriously difficult to diagnose in the under-five group. My personal inclination would be an immediate scope while he is still getting some gluten and still unhealed. But even this can return a false negative result in an infant and sufficient healing may have occurred. You are in a very difficult situation with your husband undermining your dietary efforts and a sitter who "slips up" all the time. Your only choice would be to provide all the foods that he is to be given, and *nothing else*. Without a proper trial of gluten/dairy free, there is no way of knowing, although his flares when he is given these is telling. I am a psoriasis sufferer myself and it is no fun. Your son must be miserable.

The blood test would be negative if he had not been eating gluten, as you have no doubt discovered. After a three-month trial of gluten-free I really don't think there is a lot that the ped. gastro will be able to add to the picture, since they rely on the blood tests and scopes, which require the eating of gluten, not the absence of gluten. You could do a stool test through Enterolab which can be ordered online to test his IGA antibodies and also order the genetic test for him and yourself. If you both carried the same celiac gene it would be a good indicator that celiac could be the problem. It should also show the lactose/casein intolerance and you would be able to ascertain from his fecal fat score how well his digestive system is doing.

I hope others with experience with celiac infants will respond and give your further/better advice. I just wanted to say hello and give you some thoughts.

Good luck with getting help for your wee fellow.

Terrified Mom Newbie
Terrified Mom
Posted
  • Author

Thanks for the quick response, Mushroom! Seems like we're thinking a lot alike. I have the Enterolab website open in another window. Had to approve an exception as it said their certificate expired about 12 hours ago. With so many people and celiac sites mentioning them, I figured their website had to be safe. :)

I look forward to more opinions. From browsing the forum it seems everyone is super helpful and I look forward to getting to know you all better!

Terrified Mom Newbie
Terrified Mom
Posted
  • Author

I just made an appt to take my son to Hadley for BioFeedback next Friday. Once I see those answers I think I'll know better which direction to go. I realize the MDs won't take those results seriously, but at least it will give me a stronger backbone to DEMAND that they keep looking. :D

  • 2 weeks later...
Terrified Mom Newbie
Terrified Mom
Posted
  • Author

Got my son's blood work back. Doctor is not concerned, but I can't help but be VERY concerned. All of his iga, ttg, etc., came back <3. It's his CBC (WBC in particular) that has me worried. She has also canceled the gluten-free trial and is moving forward with visits to the derm (May 20) and gastro (June 9).

Here's the WBC results...

Test result (reference range) % (reference range)

WBC 6.3 (4.2-15.5)

Lymphocytes 5.0 (0.6-4.1) 78.9% (35.0-52.0%)

MID cells 0.4 (0.0-1.8) 6.5% (0.1-8.0%)

Neutrophils 0.9 (2.0-7.8) 14.6% (23.0-62.0)

RDW high normal

platelets and MPV low normal

Everything else is right in the middle of the normal range.

So if his total WBC is quite low (though still normal) doesn't it seem odd that his lymph count is sky high? Does that seem to anyone else to be quite unusual? With a "normal" normal WBC that number is still quite high, but his ped didn't seem to care.

As for his rash, it was improving on the gluten-free diet and using Psorzema. Going off the gluten-free diet also coincided with my estranged husband taking him to another ped and his rash being diagnosed as ringworm (which it certainly is NOT :rolleyes: ). But, in order to keep the peace (ok, ok, in order to prove him WRONG) I have been using the antifungal prescribed by this other ped. His rash has worsened DRASTICALLY over the last week. What was 4 spots on his right leg is now 9. What was two spots on his left leg is now one BIG spot. Another spot that was almost GONE is coming back. I couldn't afford to keep him gluten-free with his derm appt coming in only a month's time, so I can't be sure if it was being gluten-free or the Psorzema that was helping. The only thing the antifungal is doing is keeping the scale soft.

macocha Contributor
macocha
Posted

from your son's age I would go right to a GI specialist - that blood test is not conclusive for a son your age!

here is a list of symptoms: Open Original Shared Link

specifically this blurb:

"In children younger than three, with symptoms, antibody testing may not always be accurate. However, young children with symptoms (especially failure to thrive or persistent diarrhea) should be evaluated by a pediatric gastroenterologist. Children need to be eating wheat or barley-based cereals for some time, up to one year before they can generate an autoimmune response to gluten and have the blood testing."

I can't read the labs - they confuse me - so I hope my info helps :)

macocha Contributor
macocha
Posted

adding that you should keep a notebook of what you give him right now - maybe that will help - and his reactions. I also would take photos of the rash so if he has an appt and it is gone - you don't have a thing to show the GI doctor.

I will say that if I hadn't of pushed with my kids - they would not be diagnosed now.

I would put him back on gluten and get him into the doctor - a GI one.

Oh, and to put into perspective, not sure how true, but the university of chicago indicates that medical students only get about 30 MINUTES of information on celiac in all of their training.

Run to a GI pediatric specialist (((hugs)))

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Terrified Mom Newbie
Terrified Mom
Posted
  • Author

Thanks. We're going June 9th. :)

macocha Contributor
macocha
Posted

hey, my little one's 5th b-day...good day :)

check out that univ website I put in my response - it really is informative.

I know how frustrating it can be. I hope your son feels better soon!

Terrified Mom Newbie
Terrified Mom
Posted
  • Author

I will when I get home tonight. :D

Roda Rising Star
Roda
Posted

What about getting the rash biopsied for dh? Others on here can tell you the correct way the derm should do the biopsy.

Terrified Mom Newbie
Terrified Mom
Posted
  • Author

What about getting the rash biopsied for dh? Others on here can tell you the correct way the derm should do the biopsy.

We go there May 20th. :)

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