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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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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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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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