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No One Will Believe Me!

JENinMICH

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JENinMICH Newbie
JENinMICH
Posted

Moved - double post sorry

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JENinMICH Newbie
JENinMICH
Posted
  • Author

am 33 years old and have been told in the past many times that I have Irritable Bowel Syndrome. I ate low carb for many years because I have PCOS. Due to my intense exercise regimen I added back very high fiber and unprocessed carbs.

I found out I have iron deficiency anemia and virtually no iron stores. My vitamin B and vit D are also low. I feel like crap. I can barely work out. I am so very weak. I had diarrhea every evening for two months with no stomach pains at all, just urgency. I now (at least twice a week) wake up with terrible aching in my stomach (not sharp pains - had those in the past too, not anymore) and they proceed to have something like 5 large bowel movements turning into diarrhea. I have frequent nausea and there are days where I eat very little. There are also days that I eat nonstop because I feel sooooo hungry. I have very large bowel movements several times per day.

The worst problem is the refractory heartburn/reflux I've had for almost 7 years. I also have terrible burning/gurgling in my stomach all day long. Almost like hunger pains, but not quite. Nothing helps. I'm on 80 mg day of Protonix. I feel terrible after I eat wheat it seems like. I've had two upper scopes over the last two years with everything normal. However - they weren't specifically looking for celiac. All my antibody tests were negative.

People think I am a hypocondriac. I'm not! I get weaker and weaker by the day. I've been to four doctors about this. I also have to diagnose my own problems and I'm always right!

I go to a new GI doc next week - if he doesn't believe me, I'm trying the diet on my own.

HELP!

Oh - I also have fibromyalgia, terrible neuropathy in my hands and feet, and infertility 4+ years.

Lisa Mentor
Lisa
Posted
I am 33 years old and have been told in the past many times that I have Irritable Bowel Syndrome. I ate low carb for many years because I have PCOS. Due to my intense exercise regimen I added back very high fiber and unprocessed carbs.

I found out I have iron deficiency anemia and virtually no iron stores. My vitamin B and vit D are also low. I feel like crap. I can barely work out. I am so very weak. I had diarrhea every evening for two months with no stomach pains at all, just urgency. I now (at least twice a week) wake up with terrible aching in my stomach (not sharp pains - had those in the past too, not anymore) and they proceed to have something like 5 large bowel movements turning into diarrhea. I have frequent nausea and there are days where I eat very little. There are also days that I eat nonstop because I feel sooooo hungry. I have very large bowel movements several times per day.

The worst problem is the refractory heartburn/reflux I've had for almost 7 years. I also have terrible burning/gurgling in my stomach all day long. Almost like hunger pains, but not quite. Nothing helps. I'm on 80 mg day of Protonix. I feel terrible after I eat wheat it seems like. I've had two upper scopes over the last two years with everything normal. However - they weren't specifically looking for celiac. All my antibody tests were negative.

People think I am a hypocondriac. I'm not! I get weaker and weaker by the day. I've been to four doctors about this. I also have to diagnose my own problems and I'm always right!

I go to a new GI doc next week - if he doesn't believe me, I'm trying the diet on my own.

HELP!

Jen:

Test for Celiac are very specific and you can find the exact tests for Celiac on this site. I am amazed and not that your doctors have not tested for that.

If, though your testing, nothing is apparent you can go on the gluten free diet without a doctors recommendation. Many people here are self diagnosed and never looked back. Your symptom are definitely many of the over two symptoms of Celiac.

There may be a possibilty that you may be gluten intollerant,. which may be the pre-curser to Celiac. You may have the symptoms, but not the damage.

I will pass to others, but you may want to try to diet. No pills, just a change in diet.

Hope you find your answers soon. Life is too short to feel miserable.

CarlaB Enthusiast
CarlaB
Posted

I would try the gluten-free diet. If you see improvement, then you know gluten was the problem. If you don't, then look for what else is ... start by posting here because many of us know what other ailments go along with celiac or look like celiac.

Also, remember fibro is a description of symptoms, not a disease. You should look for what the underlying cause is of the fibro as well. It could be celiac disease, it could be something else.

Guest j_mommy
Guest j_mommy
Posted

Push the Dr for the celiac blood tests at the very least. At least that's a starting point! Hopefully they will listen to you!!!

Good luck and I hope they do!

D3N1S3 Newbie
D3N1S3
Posted

First Timer. I'm 47 and Jen's story sounds like mine and many others. March 12, 2007 I decided to avoid gluten for two days. Those were the best two days of my life. The last two months have been so wonderful !!!!!!! I have not been to the doctor, this has been all on my own. I'm not quite sure I want to go back to the doctor. I've had plenty. It feels so good to have all those symptoms just disappear.

People are now asking me "what's up"? You are so........better. I've been afraid to brag. But those rights are well deserved and I'm starting to tell.

Jen, just give up gluten for a few days and see if it makes a difference. It's really easy and when you feel so good you don't want to put that stuff near your mouth anymore.

I've had severe symptoms for 15 years. Diagnosed with possible Rhumatoid Arthritis, Lupus, Lyme Disease, Fibromyalgia, Hematologist for Low WBC, but never enough evidence to support a true diagnoses. But boy, was I in pain. I've had Low Blood sugar since I was a kid. I 've had bouts of stomach pain that nobody could explain since childhood. I have not had one drop in sugar since March 12 and not one belly ache. WOW! I'm physically in shape but my health has made that very hard to maintain. I eat organic when at all possible, I watch my diet, I have been a lunatic for years looking for answers.

I am little Miss Excited.

jerseyangel Proficient
jerseyangel
Posted

Hi Jen,

My advice, at this point, would be to stay on your normal diet until your GI appt. next week.

Tell the doctor you want the complete Celiac Blood Panel done:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

You need to be consuming gluten right up until the day of the test.

Good luck :)

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Murph Newbie
Murph
Posted

I used to regularly wake up in the middle of the night due to gut pain. It would go away in maybe 1.5-2hrs, then I could sleep again. This was b4 I'd heard of celiac and WAY b4 the incredibly bad symptoms began. I wish more than anyone could ever wish for anything that I'd had a clue & gone to a good (celiac-wise) Dr back then.

Since u already have a GI appt, perhaps u should even contact them today to say you'll be needing the celiac disease blood test and celiac disease-specific endoscopy.

JENinMICH Newbie
JENinMICH
Posted
  • Author

I've been the sickest ever the past few days. I feel better if I don't eat. I had diarrhea four times yesterday and my gut just aches. I can hardly eat at all. Ugh.

I had the IgA and IgG and endomisial antibody blood tests. They came back negative.

CarlaB Enthusiast
CarlaB
Posted

Have you eliminated gluten yet? Is it making any difference?

Some people are not celiac, yet are gluten intolerant. That would make your blood tests come back negative.

However, if you see no change on the gluten-free diet, it could be something else.

Nancym Enthusiast
Nancym
Posted

Only a percentage of those without total villious attrophy will have positve blood tests. If you need a doctor diagnosis you'll have to insist on an endoscopy and ample biopsy samples. And they might be able to see the damage while they're looking.

Or... you could give up on the testing and just trial the diet. But you can't do both at the same time, the diet will mess up your test results.

Guest maybe I have celiac
Guest maybe I have celiac
Posted
am 33 years old and have been told in the past many times that I have Irritable Bowel Syndrome. I ate low carb for many years because I have PCOS. Due to my intense exercise regimen I added back very high fiber and unprocessed carbs.

I found out I have iron deficiency anemia and virtually no iron stores. My vitamin B and vit D are also low. I feel like crap. I can barely work out. I am so very weak. I had diarrhea every evening for two months with no stomach pains at all, just urgency. I now (at least twice a week) wake up with terrible aching in my stomach (not sharp pains - had those in the past too, not anymore) and they proceed to have something like 5 large bowel movements turning into diarrhea. I have frequent nausea and there are days where I eat very little. There are also days that I eat nonstop because I feel sooooo hungry. I have very large bowel movements several times per day.

The worst problem is the refractory heartburn/reflux I've had for almost 7 years. I also have terrible burning/gurgling in my stomach all day long. Almost like hunger pains, but not quite. Nothing helps. I'm on 80 mg day of Protonix. I feel terrible after I eat wheat it seems like. I've had two upper scopes over the last two years with everything normal. However - they weren't specifically looking for celiac. All my antibody tests were negative.

People think I am a hypocondriac. I'm not! I get weaker and weaker by the day. I've been to four doctors about this. I also have to diagnose my own problems and I'm always right!

I go to a new GI doc next week - if he doesn't believe me, I'm trying the diet on my own.

HELP!

Oh - I also have fibromyalgia, terrible neuropathy in my hands and feet, and infertility 4+ years.

Same boat, I am a 33 year old male and have STTTTERRRRUUGGGLEEEDD all of my life with depression. I would be too tired to get up from the couch for no reason, i wasnt sick or anything just too lethargic. I have never had a severe illness. I think that cutting out grains and anything with gluten has really helped. Been through years of misdianosis and medication which masks the problem.

For me, I have protruding gut and more of depression, neurological issues. I wouild have several bowel movements a day, I just thought it was the fiber. I have had to take action into my own hands becuase these doctors with Medical degrees dont knwo any better.

I must say that i have never felt better, I am one that has to totally avoid gluten, if not, then i get crazy. During the past three weeks I have lost 3 inches off of my waist staying off the poison.

I believe Plato said "know Thyself"

JENinMICH Newbie
JENinMICH
Posted
  • Author

Still feeling worse yet. Diarrhea 9 times yesterday. nausea. Had to go lie in bed at 8:00 p.m.

Today can barely eat. hedache, weakness, dizziness.

Called my MD - you have to wait for the GI consult - and then I will have to keeep poisoning myself while I wait for the GI biopsy.

Had to feel sorry for myself for a few minutes.

pink dreams Newbie
pink dreams
Posted

Jen, I'm sorry to hear about your problems. The doctors were calling me a hypochondriac for quite some time as well. I was/am suffering so much and no one was willing to help me! I hope that you are able to get some help soon. Good luck!

Shannon

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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