How Long To See A Difference On Gluten-Free Diet?

[ToHelpMySon]

My son's GI @ TCH's here in Colorado said his biopsy is POSITIVE but his blood tests are NEGATIVE for Celiac. She said she is confused by this and actually told me "the blood tests are so accurate". From all the research I've done and from all the Celiacs I have spoken with, they have all said blood tests for celiac disease are notoriously inaccurate, especially in young children. The GI's nurse said the biopsy is 99.9% accurate for diagnosing Celiac but the GI thinks it could even possibly be a dairy allergy? She is sending us to an Allergist and to a Celiac Info. class at TCH. She said we will do a WHEAT-FREE diet for 2 weeks and if there is no improvement we will try a DAIRY-FREE diet. I told her if we are going to do wheat I am just going to go GLUTEN-FREE for his diet.

He has been on a GLUTEN-FREE diet for 5 days, at least gluten-free to the best of my knowledge and I have only seen minor improvement in reflux symptoms such as fewer hiccups, fewer choking/gagging/coughing spells, but his behavior is still very irritable and he seems very fatigued still. How long does it take to see an improvement in my child after starting a gluten-free diet?

Also, Can an allergist diagnose a wheat/gluten allergy? A dairy allergy?

Thank you! I am so confused and desperate to help my baby boy!

Melissa

[Kay DH]

I started the gluten-free diet about a year ago; my symptoms began after getting the flu last year. After I went gluten-free my tolerance for gluten dropped such that minor cross contamination (cc) at the crumb level causes GI and other symptoms. That said, are you excluding all gluten from the diet? I've gotten sick from labeled gluten-free foods that were "processed in a plant that also processes wheat." Many processed foods have gluten as hydrolyzed vegetable protein, modified food starch, and other manifestations. I don't know if Colorado Springs has a celiac chapter, but the Denver chapter is Open Original Shared Link .

[Kay DH]

I missed a couple of points (also I misread your post as Colorado Springs, sorry). As an adult, my experiences probably won't correlate to your child, but it usually takes me a week for my mood swings/depression to go away after a gluten hit. GI problems take 3-5 days. Dairy intolerance is commonly associated with celiac, at least until the GI tract heals. So, even if your child has dairy problems, they could be tied to gluten. Just from my reading this forum, it appears that the blood tests for babies are unreliable. Babies immune systems are incomplete. I've read a number of posts in which the doctors recommended the child be retested after a few months.

[ToHelpMySon]

Kay - Thank you for that link, I appreciate it! I am actually going to a class at The Children's Hospital tomorrow for parents who have children with celiac disease, per the GI doc. I really hope it helps me gain a better understanding of where gluten is hidden. I have avoided anything that says gluten-free but says "Processed on the same equipment as wheat"....I have been checking labels against the safe and not-safe ingredient lists I've found here. I still need to check his Johnson baby lotion and Shampoo as well as his Gerber baby toothpaste. Luckly his Prevacid is gluten-free.

I am staring him on a dairy-free diet this next week along with his gluten-free diet, I have a feeling that will help even more! Do companies have to state on their products that the food was processed in the same plant as wheat even if they used separate equipment?

[scarlett77]

Kay - Thank you for that link, I appreciate it! I am actually going to a class at The Children's Hospital tomorrow for parents who have children with celiac disease, per the GI doc. I really hope it helps me gain a better understanding of where gluten is hidden. I have avoided anything that says gluten-free but says "Processed on the same equipment as wheat"....I have been checking labels against the safe and not-safe ingredient lists I've found here. I still need to check his Johnson baby lotion and Shampoo as well as his Gerber baby toothpaste. Luckly his Prevacid is gluten-free.

I am staring him on a dairy-free diet this next week along with his gluten-free diet, I have a feeling that will help even more! Do companies have to state on their products that the food was processed in the same plant as wheat even if they used separate equipment?

Johnson's head to toe wash is gluten free. Generally my rule of thumb is that it is OK if processed in the same facility but NOT on the same equipment. Food products do have to list wheat, but they do not have to list barley, rye, or oats. This can get tricky because you would be surprised the amount of things that barley/malt is hidden in like yogurt. I think they have to list manufacturing and/or facility information, but don't quote me on it. Non-food items can be a challenge since they don't require to clearly label any allergens.