TMB-EMB

Thank you! I will definitely read your post. I should clarify that I pulled her off the Miralax about 2 years ago. I’m sorry if that wasn’t clear. I just didn’t want her taking it any longer and/or her body becoming dependent on it. 

Thank you for the information. The Pediatrician has declined to do further testing stating the gastro would need to continue to follow this search for a diagnosis. Since we can't see them until October, they are making it a little difficult for me. 

One thing I should have mentioned the first time and completely forgot to add is that when she was 6 years old, during one of her hospital stays, they did 17 biopsies from her esophagus through her rectum and the doctors quote was, "all we found was unexplained inflammation".  

Thank you for your reply. She was back on gluten for approximately 9 weeks prior to the test. The gastro doctor can’t see her until October 2nd and the allergist that the dietician suggested can’t see her until September. I simply cannot wait that long to figure something out. Any other suggestions are appreciated.

Hello all,

I'm literally losing my mind with my daughter's health. She has had testing done and I'm attaching that information as well. Any help will be greatly appreciated and please feel free to ask any questions necessary.

Her general symptoms are….

1.       deep sores on her arms and legs (10 or 12 total at a time) which last for two or three weeks before clearing up. These are usually after eating consuming a large amount of bread or pasta.

2.       Severe chronic constipation – she’s been hospitalized 4 times for a week each time to clean her out. The first hospitalization was at 1.5 years old then, 3 years old, 4 years old, and again at 6 years old. She was treated with her first Rx constipation medication at 5 weeks old. She was on miralax (Rx by her pediatrician) for almost two and a half years.

3.       Small bumps on her upper arms, since birth.

4.       40 lbs overweight

5.       Flaky scalp, but in sections, not all at one time. They start out looking like a sun burn and within a couple of days they peel off leaving her hair full of dead skin.

6.       Bloating and distended stomach – ALWAYS

7.       Joint pain

8.       Irritability, large mood swings, anxiety

9.       Mouth ulcers constantly and several cavities over the years.

I pulled her off all wheat products in February and she lost 13 lbs in 6 weeks, however, the pediatrician made me feel bad about taking wheat products from her without diagnostic testing. I gave it back and she started complaining of stomach pain and was doubled over crying within 20 or so minutes. She continued to eat it and the pain eventually subsided. Now that they’ve done their testing, her pediatrician says she’s not wheat or gluten sensitive, but does see that her values have increased since the last blood allergy testing 2 years ago.

She saw a Registered Dietitian this past Thursday and she told me that I could take her off gluten products, but threw in “if it will make you feel better.” Now I’m at a complete loss and don’t have a clue what to do.

In addition – her red blood cell count was slightly out of range and her platelet count was at the very top of the high end of the range.

I’ve also had a hair allergy test done (although I do realize the medical community does not consider these valid).

Cornflakes -A breakfast cereal made with toasted flakes of corn. This does not include all maize/corn products,

it is the cereal only. - 87%

E 101 Riboflavin - Yellow food coloring. Used in various products. - 99%

E 1420 Acetylised starch (modified starch) - Thickening agent in many products - 95%

E 163 Anthocyanins - Found in black cherry yogurt, dairy products, glacé cherries, ice cream, jellies, pickles, soft drinks,

tomato, carrot or vegetable soups and sweets. - 100%

E 471 Mono- and diglyceride - It is used in cake mixes and oven ready chips. For use in baked goods, including extensive use in bread and all types of dairy foods, margarine and ice cream. Also used extensively in bread and wheat based bakery goods, which give the home baked taste. - 96%

E 629 Calciumguanylate, Guanylate - Used in many products, mainly in low-salt/sodium products. - 86%

E 953 Isomalt - Sweetener found in boiled sweets, toffee, lollipops, fudge, wafers, cough drops, throat lozenges,

and a wide variety of other products. - 89%

Margarine - Margarine is a processed food that is designed to taste and look similar to butter and is a spread

used for flavouring, baking, and cooking. - 87%

Quince - Similar to the pear in appearance, usually golden-yellow when mature. - 86%

Sole - Edible flat fish. - 99%

Wheat - A cereal grain. - 100%

White pepper - Spice made from white peppercorns. - 90%

Thanks for your time and help!