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Day 1 Of Gluten Free Diet-Thyroid Issues, But Tested Negative For Celiac


glutenfreegirlinnyc

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glutenfreegirlinnyc Newbie

Hi, 

 

I am new here so will give a bit of history! I have had autoimmune disorder since 13 (diagnosed with hyper thyroid) which has now turned hypo many years later. 

 

Aside from that I have had many joint swelling and severe stomach issues my entire life. Every blood test under the sun has come back negative for major issue including lupus, arthritis, celiac etc. Even my colonoscopy and endoscopy came back normal. I am sick of dr.'s telling me my symptoms of always feeling tired, dizzy, bloated, and having severe gas pain and digestion issues are in my head. 

I have had such bad gas pressure under my ribs that it causes chest pain and heaviness to the point I have had to have my heart checked (also normal) lol Even abdominal scans with contrast the check appendix or gallbladder have some back normal. 

 

I have notice more than ever that my issues arise after eating meals. I get abdominal pain in the exact same spot, dry mouth,severe gas (burping) and a dizzy feeling. My diet is very very wheat heavy and today is the first day I am trying a gluten free diet for 30 days to see if it helps me feel normal. Is it possible to be negative for Celiac, but have such a strong reaction to wheat as I suspect I am? 

 

I already am feeling better after having an omelet with no toast today-no stomach attack after breakfast! 

 

I hope you can all help me with tips and foods to watch out for which may seem gluten free etc. I'm not replacing snacks like chips or bread with gluten free snacks or bread etc, just cutting them totally and will crunch on something more healthy like carrot sticks:) 


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badcasper Explorer

You can't always rely on doctors and/or test results.  Listen to your body cause if you are feeling better and getting better, what else matters really.  I am self diagnosed and I have been gluten free for 6 weeks and it just keeps getting better all the time.  Try to stick to wholesome foods.  fruits,vegies, beans, and rice. Avoid processed foods, flavored foods,  I always use sea salt too.  Snacks I like that are safe Kozy rice and chocolate pudding, fritos[ make sure they are corn,salt corn oil only] King aurther brand cake is wonderful with betty crocker frosting.  Andys frozen yogurt is safe. Im very leary about eating out.  I also avoid soy but I have issues with it.  DONT EAT BEANS FROM A CAN bad idea! Be careful with medications and vitamins.  I use naturemade and can only take advil cold and sinus.  I cook a lot in the crockpot and make my own chicken soup and porktenderloin roast.  Tinkyada rice spaghetti and noodles are great and I use ragu it's safe.  soy sauce has gluten.  chex cereal is supposed to be gluten-free. I switched to gluten-free oatmeal cause reg oatmeal can be cross contaminated and probably was cause I feel better since I switched.  I use corn tortillas for Mexican food and did find a taco sauce that's gluten-free.  You don't have to spend a lot of money buying special gluten free products. 

cyclinglady Grand Master

You may not have had the complete celiac blood panel. If my doctor did not order the complete panel, my diagnosis would have been missed. You might want to take a look at a copy of your lab tests.

If you decide that you are going gluten free, check out our Newbie 101 tips under the "Coping" section.

Welcome to the forum!

LauraTX Rising Star

Welcome to the forum!  As cyclinglady said, if you would like us to take a double look at your test results to make sure nothing was missed, we would be glad to.  Even if they are truly negative, you could have non-celiac gluten intolerance, or NCGI, and the gluten-free trial diet will let you know whether or not it helps.  Eat the way that makes you feel better :)

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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