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Do These Sound Like Symptoms...

mamaof2boys

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mamaof2boys Newbie
mamaof2boys
Posted

Here's a little background on ds who is 16 months old.......................................... Jack didn't gain any weight between 9 months and 14 months and then only gained 1.5 pounds from 14 months to 16 months....he currently weighs between 22 and 23 pounds. His appetite is incredible...he would eat all day if I let him. He has anywhere from 3 to 6 poops a day and they are very mucusy (full of what looks like snot..sorry I couldn't think of a better word) and they are very foul smelling. I'm not completely sure of what all the symptoms are but do these sound like they could be celiac?? He is also allergic to milk, peanuts, egg whites, tree nuts, fish and shellfish. Any help would be very appreciated as i'm going to make an appt with his ped for some testing and would like to get more information so I know what i'm talking about. He does eat quite a bit of bread, muffins, pasta and cereal so i'm definetely thinking maybe this is what his problem could be. Thank you for any advice.

Laurie

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lbsteenwyk Explorer
lbsteenwyk
Posted

I think it is certainly worth pursuing testing of your child for Celiac Disease. Your child has several common symptoms of celiac disease: failure to thrive/failure to gain weight and frequent, foul smelling stools. Celiac children often have other food intolerances as well. Insatiable appetite is not one of the more common symptoms, but I have read other posts here about celiac kids who had a voracious appetite before diagnosis.

Most doctors have very little knowlege about celiac disease and still believe it is a rare disorder. Do your homework ahead of time. Here is link to a publication from the children's digestive health network that reviews appropriate screening and diagnosis of children with celiac disease:

Open Original Shared Link

You may also find the NIH Concensus Panel on celiac disease helpful:

Open Original Shared Link

Good luck in finding an answer to your child's health problem.

e&j0304 Enthusiast
e&j0304
Posted

I just wanted to let you know that your son sounds a lot like my daughter. We have been going around and around with doctors trying to figure out what is wrong with her and hadn't really gotten anywhere until a relative who's a pediatrician suggested celiac. I got an appointment with a ped. GI for her last week. He didn't think it was celiac, but ran a test anyway. We are stilll waiting for those results, but in the meantime I have placed her on the gluten-free diet. She has been on it for 5 complete days and is a different child already.

Ella couldn't go 1/2 hour without eating before and was clingy and irritable all the time. She just never seemed to get full. Now, she doesn't seem to obsessed with eating. She is able to function on a more "normal" level and her stools also seem a bit better today. Overall she just seems happier. We'll see I guess...we don't have a diagnosis, but I don't really need one if I'm seeing this much improvement in her. So far I'm very optimistic.

I hope you find the answers you're looking for for your son. I know how frustrating it can be.

I wish you all the best,

Shannon

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  • Recent Activity

    1. cristiana
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    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
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      By Charlie1946 · Posted

      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      Oh, my dear!  Get off that Fairlife chocolate protein shake!  That's got milk in it!  Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  If the villi grow back, they can resume making lactase again.   I react to casein and lactose both.  I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety.  So dairy is a really scary horror movie.     I take Benfotiamine and Thiamine TTFD  (tetrahydrofurfuryl disulfide).  These have anti-viral properties.   I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now.  I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy.  Thiamine TTFD helped clear up the dysphagia I was also experiencing then.  I took lots of Lysine to fight the herpes viruses as well.  Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part.   I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses. I have Sjogren's so I understand dry eye and mouth.  I found including Omega Threes, healthy fats, improved my problem.  You know how oil floats on top of water?  That's going on in our body, too.  Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes.  Choline and sunflower seed oil supplements are other choices I've tried.  Eat real food!  Eat fresh vegetables and fruit!  I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain.  I got a bag of mandarin oranges, Cuties, whatever they're called now.  They're not too acidic.  Gluten free crackers don't have any nutritional value, no vitamins.   I followed the low histamine version of the Autoimmune Protocol Diet.  The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful.  She's a Celiac herself, and the diet has been shown to improve intestinal health. I have seen liquid vitamins on line.  Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny.   
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