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if anyone has any quick ideas..


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I don't know -- but glad you are checking into the blood test for celiac.  I know someone whose daughter is diagnosed now.  She didn't have any major symptoms, but would be lethargic, and she was small for her age.  She is doing better now with the special diet.   

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We have had success with a grain-free (or low grain) diet helping constipation.

 

For nutrition related to brain function, I personally like Dr. Terry Wahl's diet. (According to her TEDx talk - I haven't read her book.) I haven't tried it with my children, though, so I don't know how they would comply. And I am excited to read a book recommended by Crimson Wife (iirc) on another thread: Healing the New Childhood Epidemics by Dr. Kenneth Bock. I also give my kids fish oil and probiotics regularly.

 

I hope the doctor's appt went well!

 

 

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I hope the appointment went well.

 

Just wanted to add that my younger dd had terribly constipation which required suppositories until she was off of gluten.  (She was about 2 1/2 when I took her off gluten.)  She was also on Prevacid twice a day for reflux.  I did a gf trial and then a gluten trial.  An hour into the gluten trial, she was refluxing.  She then did not poop for four days (not her norm).  That was it for me.  She has not had gluten since.

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I don't know if this would be related at all (I think your narrowing down the gluten thing is probably more likely), but I thought I would mention it, esp. since you are wondering if there are several factors involved.

 

We have some friends whose daughter is short and slow to grow. She had orthopedic problems with her feet and legs. She had the constipation. Eventually they figured out that she has rickets as a result of some kidney problem (it was your mentioning the kidney surgery that made me think of this in relation to the growth and constipation problems). It has to do with how her body metabolizes phosphorous, which affects vitamin D. The rickets and the constipation both stem from the same issue with her kidneys and how they metabolize stuff. Just thought I would throw that out there FWIW.

 

I hope you get some solid answers and understanding practitioners.

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Have you received the results from the celiac blood test yet?

My son was diagnosed with celiac in 2012. The symptoms he had: sluggish growth, stomach pain (they also blamed constipation-and he was constipated, but the cause of it was the celiac), he started losing weight after about six months, frequent infections (ear infections and strep), sluggishness/lethargy. Really he was a classic case. He was even anemic.

 

 

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  • 2 weeks later...

A Naturopathic Dr. recommended 1 TBSP ground flax seed in a liquid daily to me many years ago.  It works wonders without bloating and gassiness.  Don't know if that would work for your son, but I know it does around here. 

 

Three people in our house are GF intolerant and I suspect one of them is Celiac, but hasn't been tested for it.  The Celiac can't have virtually ANY gluten, Quinoa, Kamut or any alternate grains just rice flours. 

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Honestly, I would just try a gluten free trial and perhaps dairy free. In my experience, conventional medicine docs are very slow to suggest dietary remedies. My daughter suffered until she was 7 when I finally just decided to try it for myself. All I got from the doctor was mineral oil and Miralax. Trust your gut! (Hee hee).

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A Naturopathic Dr. recommended 1 TBSP ground flax seed in a liquid daily to me many years ago.  It works wonders without bloating and gassiness.  Don't know if that would work for your son, but I know it does around here. 

 

Three people in our house are GF intolerant and I suspect one of them is Celiac, but hasn't been tested for it.  The Celiac can't have virtually ANY gluten, Quinoa, Kamut or any alternate grains just rice flours. 

 

FYI-- A Celiac can have NO gluten. Even an 1/8th of a teaspoon of flour will cause symptoms, including blunting of the villi in the small intestine.  Quinoa does not contain gluten unless it is processed with flour (most isn't)--that could be an allergy. Kamut is a form of wheat, so it would contain gluten.  Also watch out for spelt (this is an ancient form of wheat). Oats are not gluten-free unless marked as such because oats are usually grown in rotation with wheat. You should be okay with amaranth, teff, rice, corn and millet flours. These are all gluten-free if in pure form. 

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Best of luck with the clean out. I think it will make him feel better in the long run.

 

Two ideas. The spinal cord surgery makes me wonder if there could have been any nerve damage to the bowel. This was something our surgeon warned us about, as in we were supposed to get in touch with him if anything changed in the bathroom. Also, I think the processing issues can affect autonomic function, too. The right supplements can optimize function even if these problems exist.

 

Since you mentioned the rash and the slow growth, and since I was reading about this last night, I'll throw out Crohn's as a long shot. Of course, with that there is usually the opposite of constipation, but it can happen. If you get the blood work done for celiac, maybe you can go ahead and ask for an IBD panel. I really don't think it's that but you never know. The other thing is allergies. You can have a panel for the top allergens, too.

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I have actually assumed this to be the case, and perhaps it is.  The yeast thread on the other board got me thinking about something though, that maybe it could be a yeast-related thing.  He was on antibiotics for the entire first year of his life due to a kidney issue that was surgically fixed.  He's had constipation issues basically for his entire life.  The clean-out is over and now we're figuring out maintenance - he claims the Miralax makes him feel funny, or think foggy, or something, plus it makes him a little nauseous, so I'm trying to find a way around that - right now, in addition to magnesium, we're trying out probiotics 3x per day as in the Dianne Craft protocol (which is somewhere here on my desk - I need to find it and actually look at it again).

 

He has a lot of leg pain but randomly (often at night).  Long story, but a sleep specialist I happened to be talking with suggested that could be an iron deficiency, and that there's a blood test for it.  I plan to bring that up with the ped if and when we go back prior to his summertime annual checkup.  We haven't decided on whether to test for celiac as he's not having stomach pain AFAIK right now like he was during the acute constipation episode a couple weeks ago.  He needs other bloodwork eventually; we'll see.

 

I've been thinking that there seems to be a lot of overlap of symptoms between yeast and gluten intolerance.  I think it makes sense to take a whack at yeast first.

 

I agree that no matter what could be complicating his personal situation, it's a good idea to try to hit the yeast and work on anything in his diet that could help. There is a natural doctor in our area that swears by Natren Healthy Trinity as the best probiotic for yeast issues because of the particular acidophilus strain it contains. Usually two months out, you are colonized with it and see a big difference and can then cut back to twice a week. The people I know who have used it feel it's very effective. I used it for a year or so, but I never had the issues your ds has or a yeast history. It definitely improved my digestion, though. Vitacost sells it. If you're doing the Dianne Craft protocol, I'd stick with it, but keep Healthy Trinity in the back of your mind if you think you may want to try something else at some point.

 

Now the legs and the iron thing you mentioned really got my attention because we had the same issues with my dd (and this isn't the dd who had the spine surgery). We did get a sleep study and she was dx'd with restless leg syndrome, which significantly is not movement but abnormal sensations. She has been borderline anemic forever, but her recent blood work was better, finally. In addition to low hemoglobin, she has a history of high RDW, which also shows up in anemia. Supposedly people with restless leg syndrome have issues with low iron and specifically low iron in a part of the brain that I can't remember. In addition to a CBC, the test I think you want is ferritin which checks iron stores. Ferritin has a very broad range of normal, but supposedly with restless leg syndrome and fatigue issues, sensitive people start to have problems when their ferritin goes below 50, according to studies. 35 is also a significant number where people will really have issues if they are pre-disposed to RLS. Both of these levels are technically normal, so not all doctors will take this seriously so it's good that the sleep specialist mentioned it to you.

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I realized something and had to come back to share. The person who clued me in about the issues with lowish iron levels when my dd started having problems was another mom of a kid who had spine surgery who had been having symptoms herself. It's interesting the ways information makes the rounds, isn't it?

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I think Natren may have a powder for kids.

 

I remember reading something recently that ten prunes a day works as well as Miralax. And remember, lots of liquids. I think that was a big trouble point for us.

 

About the allergies and immediate vs. delayed reactions. Many doctors say this, but I think ideas about this will be changing slowly. I posted not too long ago on the chat board about the newly discovered mammalian meat allergy that is triggered by antibodies formed after a tick bite, and how our allergist has been seeing a lot of it. Well, that allergy is not immediate. The reaction is occurring several hours later, even waking people out of sleep many hours after they've had a meal. I think that may widen our conception of how allergies can work.

 

Recently, we found out about three of my kids allergies. Their number one problem has always been nausea. I never knew they had allergies because their reactions were atypical, as are mine. Now that the are being treated all but one is improved in their stomach issues and fatigue. One still complains of her stomach everyday, and I am tempted to get her scratch tested since we couldn't before with her hives and only had the blood test. She had the most improvement when she was on allergy meds but I stopped it because I thought we were avoiding the allergic foods and that was enough. But then things started to go downhill when the pollen levels went up, so I started the allergy med again. I'm waiting to see if there is improvement. My big symptom is delayed, all over body pain, that is very well managed with a mild allergy med. When I ask questions about this type of thing our allergist said, "There's a lot we don't know about how the body reacts to foods." Instead of treating me like a bozo, he asked me if I was a physician and, yes, he was being serious.  :001_wub:

 

P.S. I hate relying on meds but they make a huge difference.
 

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Just now I was reading a random comments section to a random news article and saw a mention that chlorinated, flouridated drinking water can disturb the balance of microbes in the gut.  I don't know why I haven't seen that before - makes sense to me though.  Interesting food for thought.  (Fortunately ds is very good about drinking a lot of water.)

 

 

I may look for that on-line.  The vitamin store had the capsules - quite expensive.  Maybe I'll compare ingredients to the one of the other Klaire labs versions that I sometimes buy (also expensive, but potentially less).

 

I did come across a random liquid antifungal that supposedly "tastes like water" LOL.  Who knows whether it'll be effective.  I am laughing at myself, but I'll do whatever it takes.

 

 

Eta, on connecting the dots:  so I googled malabsorption of iron, and what do you suppose is a possible cause of that?  celiac, or subclinical celiac (huh?).  Also, folate deficiency is related.  When I think of B12 issues, I think of a lot of things.

 

http://www.vitacost.com/natren-mega-dophilus-dairy-probiotic-powder

 

I could never figure out why one of mine had low hemoglobin, high RDW. I have three more who never had this problem and she was the best eater of all of them. None of mine had low folate or B12, in fact, the opposite. While I had low B12 but no trouble with anemia. It couldn't hurt to check folate and B12. That's done in one blood test.

 

Absorption is also related to gut bacteria.  So that could be a factor.  ??

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It sounds like you are covering all your bases.

 

If you are worried about the excessive thirst, you can make sure his bloodwork will include a glucose serum--it probably will anyway-- and make sure it's done while he's fasting. You can also request a hemoglobin A1C, which is a measure of longer-term glucose levels.

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