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Feeling Fed Up With Celiac


Paulr

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Paulr Rookie

PLEASE GIVE ME ADVICE FOUND OUT IN DEC/07 BLOOD POSITIVE FOR CELIAC GLUTEN FREE SINCE JAN/07 BLOOD NO BIOPSY DONE YET.SICK AS HELL FOR A YEAR NOW, DOCTOR SAY'S IT WAS ALWAY'S THERE BUT STRESS BROUGHT IT RIGHT OUT. MY SYMPTOMS ARE LOOSE WATERY STOOLS,DRY SKIN ON MY BELLY & FACE ,THE SHAKES WHEN I GO TO THE BATHROOM,MY FACE IS RED ON & OFF AND MAJOR DEPRESSION MY QUESTIONS ARE - WHEN DO YOU START TO FEEL BETTER?IAM DOWN ALL THE TIME AND IS IT NORMAL TO QUESTION WHETHER YOU HAVE CELIAC OR SOMETHING WORSE ,ALSO ARE BLOOD TEST'S 100% EFFECTIVE I BURN UP JUST WORRING ABOUT THIS PLEASE BE HONEST AND TELL ME WHAT YOU KNOW THANKS


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mouse Enthusiast

It depends on the person as to how fast they react to the diet. It is normal to question the results. You can never have a false positive on the blood test, but you can have a false negative. You did not say if you were having the endoscope or not. If you are, then you must eat gluten for 3 to months prior to the biopsies. The endoscope can not rule out Celiac as it can only confirm it. They have to take about 8 biopsies from the right places to get a positive diagnosis.

Good luck and know most of us have been where you are. Time heals.

Lisa Mentor

Paulr:

Being diagnosed with Celiac is not as drastic as it may appear. A lot of it is a mind game. You need to know that what you put in you mouth can cause you serious problems. If you eat gluten you will be sick, if you don't you will feel better. That is the bottom line.

Celiac has over 200 symptoms. I too have the shakes after a year on the diet. It may take some time for you to remove gluten.

The learning curve may be steep but not do able. And you have a lot of very informed people here to answer you questions.

You can have success.

ravenwoodglass Mentor
PLEASE GIVE ME ADVICE FOUND OUT IN DEC/07 BLOOD POSITIVE FOR CELIAC GLUTEN FREE SINCE JAN/07 BLOOD NO BIOPSY DONE YET.SICK AS HELL FOR A YEAR NOW, DOCTOR SAY'S IT WAS ALWAY'S THERE BUT STRESS BROUGHT IT RIGHT OUT. MY SYMPTOMS ARE LOOSE WATERY STOOLS,DRY SKIN ON MY BELLY & FACE ,THE SHAKES WHEN I GO TO THE BATHROOM,MY FACE IS RED ON & OFF AND MAJOR DEPRESSION MY QUESTIONS ARE - WHEN DO YOU START TO FEEL BETTER?IAM DOWN ALL THE TIME AND IS IT NORMAL TO QUESTION WHETHER YOU HAVE CELIAC OR SOMETHING WORSE ,ALSO ARE BLOOD TEST'S 100% EFFECTIVE I BURN UP JUST WORRING ABOUT THIS PLEASE BE HONEST AND TELL ME WHAT YOU KNOW THANKS

You haven't been gluten free for very long and it is easy to 'mess up' and let a little in without knowing it at first. The blood tests when they are positive are definate. You most likely are still getting gluten somewhere as well as going through a gluten withdrawl.

Are you living in a house with other gluten eaters? If so you need to be have your own cooking space and utensils and you need to have your own toaster and cutting board. When you cook imagine that everyone else had a real bad case of the flu and clean all surfaces before using them.

How much mainstream 'gluten free' food are you eating? For many we need to shop the outside of the store for a few months while we heal. Fresh or frozen veggies and fruits, fresh meats, organic unfortified rice, eggs, nuts and later on dairy are what you should eat for a while.

If you have not cut out dairy and alcohol do so for a bit. If you must have alcohol make it gluten free beer or wine. Later on when you are feeling better you can add them back in (challenge) and see if you tolerate them well. You also need to make sure there is no gluten derived ingredients in your toiletries and in hobby or craft stuff.

It takes a while to heal, and there is a big adjustment but it does get better.

Don't give up sometimes it takes a long time.

babygirl1234 Rookie

i was fine up unit my mom died then the pains came back along with the D, which i havnt had when i was 1 Dx with it it could of been the bolw inf i had that caused the D but the stomach pains after i eat are still there went for a endscopy and colonscopy and both showed that my celiac disease is casing me so much pain, im on s sendative for the stomach pains so hopeful that will help and after all this time for being pain free for 10 or so years it can cause as much pain as it did when i 1st Dx with it grrrrrrr damn flar up lol

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    • 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. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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