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Celiac Ninja

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I am allergic to caffeine.

 I only have a few but they are clearly too irritating for me to consume caffeine and enjoy caffeine. The only ones that I don't experience are the flu like symptoms, the swollen eyes, my tongue doesn't swell and no cold sweats. The rest bugs me for the rest of the day, and the next morning I feel hung over! Big time hate caffeine. Found this out after quitting caffeine for months then sipped it daily and increased it. Symptoms increased and before long I hated what I was drinking.

 

 

Here are all symptoms possible for people with caffeine allergy.

  1. Skin problems such as hives, eczema, rashes, acne, severe itching
  2. Open Original Shared Link
  3. Anxiety and panic attacks
  4. Can’t focus or concentrate
  5. Tongue, glands, or throat swelling
  6. Open Original Shared Link
  7. Angry, irritable, bad mood
  8. Fatigue
  9. Dizziness
  10. Extreme jitters
  11. Chest Pain
  12. Depression
  13. Numbness in face, hands, or feet
  14. Open Original Shared Link
  15. Shortness of breath/ tightness of chest
  16. Delusions/ hallucinations
  17. Flu/ cold like symptoms
  18. Open Original Shared Link
  19. Cold sweats
  20. Eyes swollen shut

So...now I want chocolate.....it's that time of the month again. But...the caffeine!!! lol Noooooo!

So I'm looking for a certified gluten free carob instead. Or I'll have to encourage my liver to produce the caffeine enzymes that it isn't. There's a whole new study.


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Celiac Ninja Enthusiast

I think I just found my own answer?

Open Original Shared Link

Is the only certified Gluten Free carob I have found so far.

 

Am a super celiac. And caffeine is my nemesis. :( But I will try this company.

BlessedMommy Rising Star

These carob chips are produced in a dedicated gluten-free facility.

 

Open Original Shared Link

 

ETA: I just read elsewhere that their facility does not handle wheat, but is not certified gluten free. 

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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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