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My Crazy Symptoms And My Small Wallet


IndiaEileen

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IndiaEileen Newbie

Hi there,

So, some advice from all across the board would be so appreciated.

Long story short, a few months ago I had a drastic work schedule change and I figured that eating my bowl of cow milk and Wheaties cereal at 2 am was just poor digestion. Well, it never went away, my symptoms of extreme gas, bloating and terrible stomach pains (keeping in mind at this point I was about to be diagnosed with Mono, I had frequent UTI's and some kidney pains every now and again, possible carpel tunnel and tendonitis in wrists AAND back pains).

I thought it might be a dairy thing cause I had major complications with that when I was little. I switched to Almond Milk over my cereal, in my Cream of Wheat (I know, brutal on the wheat!) but still felt terrible no matter how many cups of mint tea I drank!

I moved to Tacoma, got a job with a little better schedule but I was growing really curious about Gluten free. I made the switch after some research on my symptoms (also leaving out cow milk, just occasional ice cream and, yeah yikes, my same amount of cheese intake).

I felt better after a week! I felt a little more spry, dealt with some withdrawals that kicked my bum and now, two months later, I'm even going without my regular old wrist and back pains. I'm a grocery stocker so this was pleasant.

Ok, down to it, I got a nose bleed today when I came home early from work for extreme fatigue (an ongoing thing as of the last few weeks) and shortness of breath (another ongoing for a couple weeks).

I read about the whole Intestine disease thing, my inability to absorb nutrients as well, and noted the iron part as a concern of mine. I started taking a prenatal with iron and my B's and also a vit. D gummy. I got a nosebleed randomly today, small spurt, and I'm not going to lie I spent a good amount of time cradled in my man's arms.

I know seeing a doctor or nutritionist is ideal, I'm not a huge fan of Western medicine practices, but I'm still paying off other hospital bills. Any advice given will be rewarded with virtual hugs and gluten free Kinnikinnik Kinnitoos!

So, in a nutshell:

1) Might I have Celiaac Disease?

2) Might I have anemia?

3) Am I running the risk of low infertility?


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ravenwoodglass Mentor

Yes you could be celiac.

Yes that would cause your iron levels to be low.

Yes celiac can result in infertility.

Ideally you should be tested for celiac while you are still eating gluten. If you want testing then go back on gluten right away. There are plenty of folks that are self-diagnosed either because of false negatives on testing, because they went gluten free before testing and became too ill on the challenge to stay on it long enough for testing, couldn't afford testing etc.

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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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