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Has Anyone Else Has This Happen?

Chrisser

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Chrisser Explorer
Chrisser
Posted

I don't know where else to post this (websites, I mean), so I turn to all of you.

I have what I would call extreme hunger. My meals only last 1.5 to 2 hours, and when I get hungry I get dizzy and confused-feeling. Sometimes within 15-20 minutes after eating a meal (like pork chop, rice, vegetable, salad) I starving and dizzy again and my vision gets screwy. I'm sure many of you will answer with blood sugar problems, but it is NOT blood sugar...at least so I've been told. I've been under the care of an endocrinologist, and I've had every blood sugar test done under the sun...including a 3-day hospital fast. Everything came back "normal." Has anyone experienced anything similar? Have any clue as to what this might be?? I'm miserable. I hate food. I hate eating.

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Mtndog Collaborator
Mtndog
Posted

Yikes! I'm so sorry. My first thought was blood sugar as that is EXACTLY how I get when I get hypoglycemic and it's very scary.

How long have you been gluten-free? Any chances you are intolerant to something else? panic attacks? Gosh- I'm trying to think.

Pregnancy? Medication side effect?

have you had a full blood panel?

Chrisser Explorer
Chrisser
Posted
  • Author

Thanks for the response. I'm not officially gluten-free anymore...I eat a minimal amount according to the way I'm feeling. I don't have Celiac...I don't even have the gene. But I was told last summer that I had it, and went on the gluten-free diet and that's when my body went haywire with all these issues.

It's so frustrating for the endocrinologist to tell me that it's not blood sugar because that's how I feel. I still do finger sticks every once in a while when I feel like this (even though she's told me to put the meter away) just out of curiosity. Tonight it was 75, I think. I'm just not entirely convinced that there's nothing wrong with me. I eat too much and I'm hungry too much for there not to be something wrong with me.

I do have anxiety, and although the endrocrin told me that women with anxiety do experience some of the low blood sugar symptoms I get, these episodes I get immediately after meals for sure aren't anxiety or panic attacks. My stomach feels hollow and starts growling, I can't concentrate, and I can't focus on anything. I've been trying to get in to see a psychiatrist to get my anxiety under control because it's been worse than usual with all these health issues going on, but living in a small town it's been impossible.

UGH. I want to throw things.

Yikes! I'm so sorry. My first thought was blood sugar as that is EXACTLY how I get when I get hypoglycemic and it's very scary.

How long have you been gluten-free? Any chances you are intolerant to something else? panic attacks? Gosh- I'm trying to think.

Chrisser Explorer
Chrisser
Posted
  • Author

No chance of pregnancy, and I've been taking the same medications for a while now - way before all this started.

I had a full blood panel a couple of months ago, I think, and everything came back normal. I'm waiting on results from bloodwork for my thyroid.

flagbabyds Collaborator
flagbabyds
Posted

could it be a thyroid problem? i know you probably have already had that but that sounds like me when my thyroid meds are off just the slightest

Chrisser Explorer
Chrisser
Posted
  • Author

I'm waiting on test results right now on some bloodwork for my thyroid. For the past several years it's been something that my doctors have watched closely (have been on bloodwork orders every 6 months), but they never felt it was something to treat. It's always on the low end of normal and a couple of times has jumped out of the normal range to low. So I'm not on any thyroid meds and never have been.

could it be a thyroid problem? i know you probably have already had that but that sounds like me when my thyroid meds are off just the slightest
e&j0304 Enthusiast
e&j0304
Posted

I really don't have any insight for you, but I want you to know that you're not alone!!

My little 4-year-old has been this way since birth. She has always been excessively hungry (although she is of average weight and only 10% for height). We have had every medical test run under the sun and were even sent to a psychologist for her when she was 2. She got better (much better) on the gluten free diet, but not 100%. We too had thyroid tests run and her's are abnormal so we will be following up on those. She rarely goes more than 2 hours between meals and snacks. I feel as though she never really knows what full is...

I'm sorry you're feeling this way. I know how horrible it is to watch my child suffer through this and it has to be even worse to live it. Have you experienced any hair loss or thinning? That is the other thing we have gone through with my daughter.

I wish you the best of luck. I wish I had some answers for you.

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chrissy Collaborator
chrissy
Posted

chrisser----a blood sugar level of 75 is pretty close to being considered "officially" low. it is at the bottom end of normal. maybe normal for YOU is a little different than the "standard" normal. i have a lot of trouble with my blood sugar dropping. if you have reactive hypoglycemia it may not show up with the normal tests that they do to test for hypoglycemia. i have struggled with this blood sugar problem for years-----i don't know if it would show on a blood test, but i know that eating eliminates the symptoms. you might want to carry almonds around and just nibble on them through-out the day and see if it seems to carry you through a little better. sometimes when i get really low, i will break out in a sweat and get really shaky and have a hard time concentrating. it is a really creepy feeling to wake up with your blood sugar already dropped low---i've only had this happen once or twice. when it gets really low i just start eating anything and everything i can until the feeling goes away. it would probably go away after eating less than what i eat, but i just feel so uncomfortable---it is a very restless and yucky feeling.

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    • knitty kitty
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      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
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      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
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