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Diagnosis: Celiac Disease ?


bpstrade

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bpstrade Newbie

Since mid May 2014, I have had frequent lower abdominal pain that has increased in intensity and frequency. The pain is present only when walking or standing, if I sit or lay down the pain disappears within several minutes.  Some days I am pain free even when standing or walking, but other days after sitting the pain reoccurs with standing or walking and again sitting or lying ceases the pain. I can even ride a bike pain free. CT scans and other procedures have not found a cause. Finally, I have been diagnosed with Celiac disease via blood tests and endoscope – biopsy this week.  I have not exhibited any other celiac symptoms. I started checking everything including RX’s for gluten free status. Currently, I am eating only gluten free meals.  Need help understanding the situation. Any comments will be appreciated Thanks


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cyclinglady Grand Master

Welcome!

Here is a link to a thread that contains valuable tips for newbies (it can be found in the "Coping"section of this forum):

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Let us know if you have specific questions!

mommida Enthusiast

You are supposed to be eating gluten for a successful biopsy.

cyclinglady Grand Master

Sorry, that you were diagnosed with celiac disease. The good news is with the gluten-free diet and support from family friends and cyber friends, you can get well.

Besides the newbie tips I discussed earlier, the best advice I can give you is to allow enough time to heal. celiac disease has so many symptoms. Each one of us are different in therms of those symptoms and our rate of healing. Some take one to three years to resolve the symptoms. There is a huge learning curve, so in the beginning you might feel as those you have taken a few steps forward only to slide back due to cross contamination to gluten or a discovery of an intolerance (e.g. Milk ). But you can get better!

Research, research and research! You are your best advocate for your own health.

Again, let us know if you have any questions.

Cara in Boston Enthusiast

My son had little or no symptoms too.  He complained for about a week of having a stomach ache.  Other than that, the only thing we saw was a drastic change in behavior . . . tantrums, easily frustrated, no impulse control (not uncommon for kids)  

 

Once he went gluten free, he was back to "normal" in less than a week.  Then, we started noticing other things that we didn't even know were related.  The dark circles under his eyes went away, he grew three inches, he was sleeping much more soundly, he had tons of energy, his appetite was fantastic, his hair got thick and suddenly, CURLY.  It was weird.  

 

You've been diagnosed with celiac disease so don't let your lack of symptoms deter you from sticking to the diet 100%.  

 

I was diagnosed after my son and realized I had all the classic symptoms (I just thought I was getting old . . . )  I really didn't know how bad I felt until I started feeling great.  No more random headaches, no more insomnia, etc. etc.  Maybe you have symptoms and you just don't realize it.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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