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How Long Before We Should See Some Improvement


Celiac's Mom

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Celiac's Mom Newbie

HI there everyone,

My 12 year old son was newly diagnosed with Celiac last week (Nov 8 at 12:30pm - never forget that day as long as I live). It has been quite the week of learning and reading and I should say most definately obsessing...I'd like to first say thank you to everyone on here. This has been my lifeline for questions I have about different foods and brands. It's hard to believe there has been discussion about everything I have in my cupboards at some point in time on this forum...you all have been a life saver for me...

My question is - how long before I can see some improvements with my son. His symptoms were diarrhea and cramping, upset stomach (with some occassional vomitting). The diarreah has subsided but the upset stomach and cramping continues but only in the evenings at bedtime (as they always were). The day time he says he has no symptoms whatsoever but that was always the case. He is dealing with this much better than I expected but I think that is the calm before the storm...he is realizing that this is forever and it's starting to become very real for him now...panic is starting to set in...

I have him on acidophilis and have been very strict with this gluten free diet. In this short time, I have bought him his own toaster (to heat his gluten-free waffles), his own waffle iron (to make his waffles), his own sugar, butter, gluten-free cereal containers. Switched over the every day products for cooking to gluten-free.

On a positive note, Thanksgiving was easier than I thought...I found some Celimix and made buns (which everyone ate) and used buckwheat flour and cornstarch to thicken the gravy, and then the usual mashed potoatoes, carrots, salad and of course turkey. Other than the ham that my mother in law brought the entire meal was gluten free. We insist he serve himself first so there was no chance of cross contamination from the ham. We made the Celimix chocolate cake for dessert, which tasted like any other chocolate cake out there...

The food is obviously not the main problem, I am trying to convince him that he has to eat this way but without any improvements, I can see he is starting to doubt me...I am supposed to see a dietician and pediatrician (sometime in this lifetime) I still haven't heard from them yet. Basically when I found out they told me to search the net for advice...The kids has to eat and start feeling better so he can see for himself that this is real and the change in eating is working...


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ShayFL Enthusiast

Welcome!

Many Celiacs are also intolerant to Casein found in cow's milk/goat's milk at least for the first few months while healing. The reason being is that the tips of the villi are what allows us to digest dairy. These tips are the first to be damaged in Celiac. So it may be that you need to eliminate dairy for a few months to allow his intestines to heal. You can then try to reintroduce dairy. Some can eat it again and others cannot and say the symptoms are the same as glutening. It is trial and error with dairy.

Also make sure 100% gluten-free including toothpaste, gum, chapstick etc.

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    • Scott Adams
      It sounds like you have an allergy or separate intolerance to quinoa, but there is the slight possibility it was somehow cross-contaminated with wheat, even though it was certified gluten-free.
    • trents
      Unless gluten exposure is happening on a regular basis, it is doubtful that blood antibodies would show up elevated in testing. It takes time for them to build up to detectable levels.
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      HI Nancy, In your first post, you said that you were diagnosed by biopsy and blood test - this is what I was referring to: the blood test is for antibodies that are made during active disease. After a period on a strictly gluten-free diet, the antibodies return to low level. It is a good way of checking for accidental exposure if symptoms persist. If you are reacting to foods that don't contain gluten, you may be reacting to something else. Alternatively, a condition called SIBO is common in people with coeliac disease, where there is an overgrowth of bacteria in the small intestine. This can be tested for with a simple breath test. The main treatment is with a course of antibiotic. Small Intestinal Bacterial Overgrowth (SIBO)
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      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
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