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Suddenly Have Gluten Sensitivity?


lostinpa

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lostinpa Newbie

I have been tested twice for celiac disease and both times my blood work came back negative..I have MS and thyroid problems. I ended up doing the radioactive iodine to kill my thyroid.  I have iron deficient anemia as well.  The anemia only started about a year ago. I had an endoscopy to see if I was bleeding internally.  The only thing that showed up was my stomach lining was red and inflamed.The doctors said that was from my use of Motrin for the last 8yrs.  Never a mention of gluten sensitivity.  Can you all of a sudden be gluten sensitive or was I born with it?  

 

I am so confused about this...


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notme Experienced

me too!  why do you think you have gluten sensitivity?  celiac wouldn't show in your stomach, it would show in damage to your small intestine.  have you had an endoscopy?

lostinpa Newbie

Yes I had an endoscopy and a colonoscopy.  The reason I might have a sensitivity to gluten was from the suggestion from my neurologist.I have had stomach issues my entire life.  Nausea, constipation, stomach pain....

mamaw Community Regular

did  they  take  several biopsies  when  you  had the  endo done? I too am  thyroidless  from RAI...plus  several other  autoimmune  disorders...it  appears  once  your  get  one  autoimmune  more  follows.....

You  can develop  sensitivity   at  any  time...

There  are  many  who only  have  anemia  &  docs  put  hem on a gluten-free  diet....

Lost  in pa...... I'm  from  western Pa.....(Pittsburgh area)

NoGlutenCooties Contributor

Can you all of a sudden be gluten sensitive or was I born with it?  

 

Welcome to the Forum LostInPA -

 

You're born with a predisposition for Celiac - the predisposition for it is genetic.  But that doesn't mean that you will necessarily get it.  Some develop the disease very early in life - pretty much as soon as they are given solid foods that contain gluten.  Others don't develop it until very late in life.  Some develop it after a traumatic event (i.e a serious illness, pregnancy, etc.).  Some have intense symptoms and some have no symptoms at all.

 

(FYI... about 1/3 of the population has at least one of the genes identified as predisposing you to Celiac.  Only about 1% of the population actually has it.)

mommida Enthusiast

A gluten free diet has been shown in some studies to be helpful for auto-immune diseases.  (In basic terms..  the gluten protein chain is more complex,  choosing a simple diet is easier for an already stressed body~ so eliminating extra stress in the gut enables the body to be healthier.  The usual suspects for food intolerance/allergies are well known as the top 8 allergen list) 

 

I have known an MS sufferer who went on the gluten free diet as a last line of defense (she could no longer afford her medications).  She has had an amazing turnaround in her health.  She has also decided to avoid sugar among other allergens.  Her doctor now really stresses to patients that changing their diet is part of treatment plan that works.

 

If you have had testing for Celiac/intolerance completed you can start the diet.  Welcome to the board!  Any questions feel free to ask.  Peruse old posts by all means, but if you need to ask questions, it might be best to start a new thread.

sarahdea Rookie

Yes. My gluten-insensitivity seems to have been triggered by pregnancy. I am very new to gluten-free lifestyle.  Like you, I have thyroid problems. I have to pay down my existing medical bills before I get the endoscopy test to get more difinative results...  But for me, the bottom line is, how do I FEEL. This gluten thing hit me all of a sudden, and I just felt terrible after eating: I mean debilitating gut pain!   When I cut out gluten, I stopped having excruciating pain! And now that I have cut out dairy, my other GI issues seem to have calmed down as well.  

 

So, IMO, doctors and tests ARE important, but as Celiac and NCGI are only treatable by diet, change your diet and see how you feel. :)


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kareng Grand Master

Yes. My gluten-insensitivity seems to have been triggered by pregnancy. I am very new to gluten-free lifestyle.  Like you, I have thyroid problems. I have to pay down my existing medical bills before I get the endoscopy test to get more difinative results...  But for me, the bottom line is, how do I FEEL. This gluten thing hit me all of a sudden, and I just felt terrible after eating: I mean debilitating gut pain!   When I cut out gluten, I stopped having excruciating pain! And now that I have cut out dairy, my other GI issues seem to have calmed down as well.  

 

So, IMO, doctors and tests ARE important, but as Celiac and NCGI are only treatable by diet, change your diet and see how you feel. :)

If you go gluten-free, there is no point in other celiac tests - blood or endo. You will have to go back on gluten for a few months to get an accurate celiac test. It's best to get tested before you go gluten-free.

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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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