Persistent gastro symptoms despite gluten-free diet

[nicolecox.01]

Hi everyone. I'm wondering if anyone has any ideas or advice that might help us. My 9 year old daughter was diagnosed with Celiac 3 years ago, at age 6. She has been completely and strictly gluten free since, as well as diary free. She would have several days here and there of tummy pain but overall was doing well. She also has several food allergies including peanuts and tree nuts, and bananas. Several months ago she developed worsening stomach symptoms, including daily cramping, nausea, constipation (despite treatment), overall unwell feeling, pale skin, random vomiting etc. It has been going on daily for several months.     Initial test results including ultrasounds, bloodwork and thyroid are all normal. Has anyone experienced something similar, and if so, were you diagnosed with another condition? Any ideas or suggestions would be greatly appreciated.

[knitty kitty]

On 7/21/2018 at 8:59 PM, nicolecox.01 said:

Hi everyone. I'm wondering if anyone has any ideas or advice that might help us. My 9 year old daughter was diagnosed with Celiac 3 years ago, at age 6. She has been completely and strictly gluten free since, as well as diary free. She would have several days here and there of tummy pain but overall was doing well. She also has several food allergies including peanuts and tree nuts, and bananas. Several months ago she developed worsening stomach symptoms, including daily cramping, nausea, constipation (despite treatment), overall unwell feeling, pale skin, random vomiting etc. It has been going on daily for several months.     Initial test results including ultrasounds, bloodwork and thyroid are all normal. Has anyone experienced something similar, and if so, were you diagnosed with another condition? Any ideas or suggestions would be greatly appreciated.

Have you been keeping a food journal?   Often times recording every thing that is consumed will help pinpoint problematic foods or food types (greasy foods, cold foods, etc).  Also record any symptoms after eating (pain, mood changes, etc).

Celiac Disease causes malabsorption which results in malnutrition.  Celiacs can have problems absorbing enough vitamins and minerals.  

Vitamins A, D, the eight B vitamins, and magnesium are often low in Celiacs.

Magnesium can help relieve constipation.  

Pale skin and vomiting can be symptoms of B12, folate or niacin deficiency, or iron deficiency.  Screening for nutritional deficiencies might be warranted.  

Hope this helps and I hope your daughter feels better soon.

 

[tessa25]

Did they retest her celiac blood tests that failed at diagnosis? They should be normal now.

[LilyR]

I hope she finds help and relief soon.  For me, I am noticing other than gluten, I seem to have to avoid all items with corn and soy ingredients.  And wow, do those ingredients sneak into a lot of foods! Especially the corn, because there are many names of ingredients you would not know are derived from corn.  (But yet it's tricky,because some people say they can handle foods with soy lecithin in them, but some can't. So stop those foods, and once she is better you could give them a try and see.)  I guess also dairy can be a problem for some, and also oats, even the ones that are claimed to be gluten free, but they are still a grain, and so that bothers some people.  I read an article online that said people who can't eat gluten often can't eat corn, soy, oats, or dairy.  (Sometimes dairy can be added back in later, once the stomach heals.) Can you see a nutritionist to see if they could help you with food and meal ideas?  Also maybe get back with the stomach dr to make sure it was not a false diagnose and there is something else going on, or if she has celiac, but also some other issue as well that they have missed?  Also, it can take a few months of going gluten-free before you start feeling any better.  Or are there any specialty hospitals in close enough driving distance you could try? I am so sorry she is still suffering so much.  It is very hard, and also I am sure so hard for you too, to see her like that.  It will get better, but it seems there are times when it takes many more appointments and tests to get it all figured out.  Hang in there!!  I know it's hard though.