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Negative Blood Test, Still Might Have Celiac?


xoxobriannamarie

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xoxobriannamarie Newbie

Hi everyone, I'm 14 years old and I have recently had a lot of stomach problems. i have had blood tests done, and an ultra sound to rule out gall bladder problems. My symptoms range from stomach cramping, fatigue, being tired all the time, a little acid reflux (which im supposed to be taking a pill for), and a weird skin rash.

My dad had crohn's disease,is lactose intolerant, and has a lot of stomach problems. I have already tried cutting out products with lactose in them, and it didnt make a difference.

My last blood test came back negative for gluten intolerance. Could i still have celiac? I have been doing TONS of research, and I am really convinced that I have Celiac. Should i try a gluten free diet? Im so sick of feeling like crap all the time. I seriously feel like i'm 40 years old sometimes, not a young teenager. I want my body to be healthy, and I want to FEEL healthy.

thank you for all of your help (:


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mushroom Proficient

Hello, and welcome to the forum.

Actually, there is no blood test for gluten intolerance, per se. The only tests currently available test for celiac disease only, which is a specific form of gluten intolerance. Doctors (and researchers) are now recognizing that gluten intolerance exists outside of celiac disease (called non-celiac gluten intolerance) but to date they have not been able to define it or find a test for it. The best way to find out if you are gluten intolerant is to stop eating it and see if you get better. :)

xoxobriannamarie Newbie

thank you for your help:) I am definitely going to try a gluten free diet. do you have any tips in terms of making sure I dont accidentally get contaminated with gluten? thank you!

Luddie Newbie

Hello, and welcome to the forum.

Actually, there is no blood test for gluten intolerance, per se. The only tests currently available test for celiac disease only, which is a specific form of gluten intolerance. Doctors (and researchers) are now recognizing that gluten intolerance exists outside of celiac disease (called non-celiac gluten intolerance) but to date they have not been able to define it or find a test for it. The best way to find out if you are gluten intolerant is to stop eating it and see if you get better. :)

True, stopping it would be one way to see, but if you're planning to have any endoscopic testing done you shouldn't stop eating gluten before you have it. I know people (in my own familly) who self-diagnosed (after seeing at least two doctors) and went gluten-free and at least their bathroom symptoms all went away! I myself did not have an endoscopy but relied on my doctors perception (and a positive genetic test) to say I have celiac. It's just so personal! Hang in there. As long as you're really still looking for answers you'll get them. Check out the Specific Carbohydrate Diet and maybe even the GAPS. Every little bit of additional information helps, although trying to shuffle them all together into one deck is challenging at first.

Luddie :)

ravenwoodglass Mentor

thank you for your help:) I am definitely going to try a gluten free diet. do you have any tips in terms of making sure I dont accidentally get contaminated with gluten? thank you!

Go with as much whole unprocessed food as you can. Meat, fish, chicken, beans, rice, potatos, fruit and veggies are all gluten free in their natural stare. You want to avoid anything that has wheat, rye, barley or oats to avoid gluten. If you live in an area that has a Wegmans they label all their gluten free food with a circle G. Kraft and Unilever brands will clearly label gluten ingredients. You don't want to use the same toaster for gluten free breads as you did for wheat bread. And avoid using scratched cookware that has been used for gluten food as well as cutting boards and wooden utensils. For your gluten free pasta you will need to have a different strainer also.

The diet can be hard to get used to at first and don't be surprised if you get a bit moody when you first start it as some of us do go through withdrawl.

xoxobriannamarie Newbie

thank you so much for all of your help!

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    • Roses8721
      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
    • rei.b
      So far 3 months in - worsening symptoms. I have had the worst constipation in my life and I am primarily eating naturally gluten-free foods like potatoes, eggs, salad with homemade dressing, corn tortillas, etc. I hate gluten-free bread and pasta so I don't eat it. Occasionally I eat gluten-free almond flour crackers. As stated in the post, I don't have any vitamin deficiency. I was already tested.
    • rei.b
      As I said, I do not have any vitamin deficiency. I was already tested.
    • Wheatwacked
      Talk to your  Talk to your provider about testing for vitamin and mineral deficiency.  celiac disease causes malabsorption and eventually malnutrition.  Especially vitamin D. Having the gallbladder removed seems to be a common step on the way to a Celiac Disease Diagnosis,  Gallbladder is a sympton of deficient Choline. Eggs and red meat are the primary source..Choline makes up a majority of the bile salts.  The bile gets thick, doesn't get enough into intestine to digest fats well.  Can eventually back up into gallbladder, cause gallstones.  Without bile, bowel movements can become hard. Try to avoid all processed foods while you are healing, The gluten-free foods are not fortified with vitamins and use various ingredients to mimic fat that bothers many Celiacs.  Choose vegatables with low omega 6.  Optimum omega 6 to omega 3 ratio is less than 3:1.  Wheat flour is 22:1.  Grass fed milk is 1:1.   Commercial Dairies milk is 5:1.  They feed wheat, rye and barley Gluten as part of the food mix.  
    • trents
      Your DGP-G is also high. The thing to do now would be to trial the gluten-free diet for a few months to see if there is improvement in symptoms.
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