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11 Mo Old Suspect Celiac


SophieSJ

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SophieSJ Newbie

After weeks of lurking here and doing my own research I have decided that I need some BTDT opinions about my son's symptoms. Jake was born last August, a healthy 7lb 10oz and 20 inches long after a VERY short labor which lead to one push in the birth center tub. He was healthy, happy and right on track (despite some food allergies that came thru the Breastmilk) until 7 months. From his 4 month appointment to his 7 month appointment he dropped from 14lb13oz to 13lb 8 oz, though his length did increase a little. The Dr wasn't concerned, just told me to start solids because "breastmilk alone doesn't have enough nutrients/fat in it to sustain a baby this age". Though I knew this was a crock, I had already started solids sporadically and decided that more regular feeding couldn't hurt so went for it. He went from having loose regular stools to being constipated regularly as soon as we increased his food intake. He did gain but has yet to get back on the charts (16lb 11 oz at 10 months) and even his length is starting to drop percentiles. He eats like hog, becomes "bloated" very easily but when he wakes up in the morning, after going 12 hours w/o food or nursing, is much less bloated. His stool is very hard and pebble like, despite the fact that all he eats is steamed fruits and veggies, and often has large amounts of undigested food in it. He was/is behind enough in his motor skills that Birth-three comes out for P/T twice a month. Though he has developed on the normal curve, that curve is very consistent with his weight instead of his age (ie. he is the size of a 6/7 month old and is doing what a 7 month old would/"should" be doing). I suspected Celiac from the start but the Dr wanted to wait to test. does this sound consistent with Celiac to you all or am I grasping at straws here? Are there any other tell tale signs that I can look for, everything I read says symptoms vary so much that there is no definitive sure thing to look for? Thanks to everyone in advance, I want to find out ASAP so I can start him on the right path as early as I can.


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hjkmatthews Apprentice

Well, I am no expert by any means, but a lot of what you wrote could be Celiac. My daugther also would be extremely bloated all day/night (stomach distension) and would be a little better in the morning after sleeping all night. She had irregular bowels from about nine months, sometimes episodes of diahrrea, occasional bouts of constipation. She also began having asthmatic symptoms and problems with her ears/throat/infections as well. I believe that when she began eating the cheerios, gerber biters (crackers/cookies), and other baby products containing gluten that she started to get sick in many different ways. Now that she has been diagnosed and is on the gluten-free diet, she hasnt even had so much as a cold. No more breathing treatments for the asthma, no more ear or throat infections, but still some irregular bowels, but apparently that will take awhile to become normal. (If ever, there is always cross contamination issues with gluten). Oh yeah, one more thing, the biggest issue I had was that although she was always in the ranges for her weight/height/motor and other skills, her arms and legs were very skinny, big belly, and thin hair that wasnt getting thicker. Her bowels were also very odd in that I thought there was far too much 'undigested' matter. Whole pieces of food going through...Anyways, I hope that you find out what is going on with your little on. I know it was a blessing to finally be able to help our daughter feel better!

Good Luck!

flagbabyds Collaborator

This sounds a lot like celiac disease and if your doctor now doesn't want to test him you might want to switch to a different doctor.

Boojca Apprentice

I agree with everyone. Sounds like celiac disease to me. My son, 2 1/2, was just diagnosed in June. He had no symptoms other than "the ethiopian look"...extremely bloated belly, see every rib, vertebrae, arms & legs just skin and bones. He was consistently in the 50 and 75th percentiles for height and weight...until this winter. Then he fell off the charts, he is 2 1/2 years old and weighed 23 lbs. He also started to be very fatigued. He would lay around all day, didn't have any interest in playing with the other kids, etc... We had a blood test done, they sent it to the Mayo Clinic to test his TTG levels. That came back extremely positive, so they did the endoscopy biopsy to confirm. Again, positive.

I would say make your doctor do the test, and if he/she refuses then find another doctor. Or, even better, find a pediatric GI specialist.

And don't be overwhelmed by the prospect of going gluten-free....I was at first, but I found this board quite quickly and can honestly say this isn't hard at all! I've found many great gluten-free items such as mixes for breads and treats, great pasta (tinkyada is our favorite) and the number of "normal" foods/brands that are gluten-free or label clearly is AMAZING.

Don't loose this message board, though. It's the best! The peole are wonderful and so willing to help...it will by far be your best resource!

Bridget

chasesmom Newbie

Hi,

Sounds like you are getting good support here, the only thing I can add is that if you are still breastfeeding, you too will have to go gulten free. At 4 months old, I figured out through trial and error that my was at least gulten intollerant. I nursed him until 13 mo. and began to introduce solids after 6mo. As long as I remained gluten-free and I kept him gluten-free he was great. Hope this helps and good luck.

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    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
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