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So Discouraged, Hypoclycemic And Stomach Inflamation


CynthiaSt

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IrishHeart Veteran

I guess my suggestion that you see an endocrinologist was completely disregarded?  :(

oh well, I tried.

Best wishes!


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CynthiaSt Rookie

Hi IrishHeart,

     Please don't be offended. I am not making any final decisions on my next step until my doctor's appointment on Jan 21.

I am trying to be very educated as to my alternatives so I can make a good decision after the appointment. I certainly have not ruled out the endocrinologist.

   I am, also very interested in how people who have cured these problems have done it. We all have to help each other out on this journey and I appreciate your advice. Sometimes it takes months up here to get in to see these specialists. I have had to wait 3 months just to get the results from my scope.

Cheerio

CynthiaST

IrishHeart Veteran

Hi IrishHeart,

     Please don't be offended. I am not making any final decisions on my next step until my doctor's appointment on Jan 21.

I am trying to be very educated as to my alternatives so I can make a good decision after the appointment. I certainly have not ruled out the endocrinologist.

   I am, also very interested in how people who have cured these problems have done it. We all have to help each other out on this journey and I appreciate your advice. Sometimes it takes months up here to get in to see these specialists. I have had to wait 3 months just to get the results from my scope.

Cheerio

CynthiaST

 

I am not offended, Cynthia. :)   I am concerned for you, that's all.

An endo is the best resource for hypoglycemia and thyroid issues.

Best  wishes!

pricklypear1971 Community Regular

Do the supplements upset your stomach or ulcer? My stomach gets totally inflamed when I take them. I am ok for 1 day, then I have terrible pain from the inflammation. I have even tried opening them up and putting them in mashed potatoes. But I can still only get away with it for 1 day. I want to take them. I just need to find a way that they won't cause such inflammation. Maybe my stomach is still healing from the gluten?

Cheerio

CynthiaST

I've been gluten-free almost three years. In the beginning, my stomach hurt and I was nauseous over many things. It took me six months to discover my "glutening symptoms"...headache/allergy feeling and cannonball in my stomach. At around 9 months-1 year it switched to stomach punch and two weeks of acid stomach. The hypoglycemia came in around 9 months?... No relation to gluten.

When I'd get the acid, I'd stop all supplaments except thyroid meds. Like you, it hurt and made things worse. Then I'd have to start up again - the acclimation to iron was the worst.

Now, at almost three years gluten-free and 9 months with higher t3/lower rt3 I can *mostly* continue my supplaments after a glutening. I take 1-2 days off rather than 2 weeks??? I am handling iron much better - no nausea.

I don't have other intolerances other than a weird intolerance of commercial mint flavored products, and too much gluten-free junk food makes me feel gross and generally teetering on hypoglycemia.

I did wonder, when my glucose was swinging, HOW I was going to make it. I felt so out of control, and it would hit so unpredictably. I hated it. I was so unexpectedly thrilled when it turned out to be t3. No one suggested it, no one told me that could be it....I'd read about some thyroid patients being mistakenly dxed type 2 because they weren't in hormone therapy....but never thought it could be me - ON therapy...with high rt3 blocking my cell absorption.

Talk about this with your doctors. Some nd's are knowledgeable about thyroid, others not so much. Most md's are reluctant to use t3 or combo therapy, and use TSH to dx thyroid...not good in this situation. If you ask compounding pharmacies for names of doctors who rx t3 and combo thyroid meds that's your best bet. Or, get on thyroid sites and ask for a reco in your area. That's how I found my "better" nd. Some people have luck with integrated or functional md's. Unless you are dxed diabetic along with thyroid, most thyroid patients I talk with don't see endocrinologists. There's a shortage or long wait lists to get in, and they trend to diabetes care/maintenance. Also, unless you have clinical Addison's or Hypoglycemia, they probably will not dig into it, from what I've head from other thyroid patients.

Hopefully, if it is your thyroid it will self correct if you can get nutrients up. Your thyroid needs d, iron, selenium, chromium, and b's to make and utilize thyroid hormone. I personally struggle with d and iron...but as they go up I can tolerate more thyroid meds...which is good (because I don't think my thyroid is doing much on its own). I do take supplaments for ALL if those. A good diet isn't enough for me, or most who are thyroid challenged. I can say liquid vitamins seem to go down easier. I wish i'd started on those.

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
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      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
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