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EasterLily

New to diet and not dealing well

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Hello. I have not been officially diagnosed with Celiac Disease as of yet. My doctor has put me on a Gluten-free diet to see if my condition improves. If so, then we will take it from there. My grandmother had celiac disease, so he thinks it's a good possibility given my history and symptoms.  I have been diagnosed with IBS, which I've had since I was a teenager, Fibromyalgia,  arthritis, anxiety disorder and depression.  About 2 years ago I noticed my stomach was really getting bad when it came to eating. Figuring it was just my IBS, I stopped eating most processed foods. After a few weeks I noticed my diarrhea and stomach cramping were greatly reduced. I have alternating IBS, so I never know whether I'll be constipated or not on any given day. I lost a lot of weight - which was good because I was gaining weight quickly which is unlike my metabolism. Any issues I had after that I chalked up to my IBS and/or nerves. About 8 months ago I was having issues with extreme nausea and other symptoms and was diagnosed with acid reflux. I was put on Omeprazole 20 mg in the morning and over-the-counter Omeprazole 20 mg in the evening. All the symptoms disappeared. (Nausea and reflux symptoms.) then a month later they all came back again and I adjusted my diet after noticing a pattern of certain foods. (Or so I thought.) The nausea would come and go, but I didn't have the indigestion, dry cough or sore throat anymore. When the nausea would come back I would up my Omeprazole to 40 mg and in a few days  I would feel better and go back to 20mgs. 3 weeks ago, that method did not work and I have been extremely nauseous for the past 3 weeks. I had new symptoms however, bloating, burping, gas and diarrhea and constipation more often than normal with my IBS. The bloating was so severe my stomach was distended. I have been wearing sweatpants for 2 weeks because I cannot fit into my jeans. I had a endoscopy and nothing was found. I was to do a barrium study, but I am too bloated and nauseous to drink it. I was given Zofran but that never really worked. It took the edge of the nausea but that 's about it. It constipated me horribly so I don't bother using it anymore. I have been waking up in the middle of the night with the WORST pains in my stomach that would go away about 10-15 min after moving my bowels. However, the past week it has been diarrhea in the middle of the night and far more often. I would wake up in the morning feeling ok, but as the day goes on I become more nauseous and bloated and the more bloated I am the more nauseous I am. I have been struggling with body aches. It's to the point where it feels like I'm coming down with something. AFter I eat, it feels like a lead weight sitting in my stomach. Even the smallest meal feels like a three course meal. Gas X wasn't working so I stopped taking it. I've read it is not gluten free so I am glad I stopped it. I  have been eating 4 small meals a day, which has helped, but not lately. Nothing is working anymore.

I am on day 3 of my gluten free diet. I am hungry, lightheaded and still nauseous. I've been reading posts and information on this site for a few days and I have to say there is so much information on here, it'll take awhile to read it all, but I am thankful I found you. I am back on my 325 mg of Iron because that's what I use when I get lightheaded. Today it's taking a bit longer to work. My last blood panel, about 8 months ago, showed low levels of B12. I was given something to take but fell out of the habit months ago. I know it's only been a few days, but I've been fighting depression for the past 3 weeks. I'm trying to find small positives to focus on and it helps for awhile, but then the nausea gets bad and it all goes out the window. My phobia is vomiting, so I've been having anxiety attacks daily and it's triggering the IBS and the acid reflux. I have given up more of my favorite foods and I am beginning to think bananas - my all time favorite food - may be contributing to the nausea, so I have temporarily cut them out. The indigestion, burping, gas and bloating have gotten a bit better and I'm not having spasms in my small intestines area anymore. But the nausea is horrible as well as the sharp stomach pains. It's like someone is inside me with a knife. The pain before, during and after a bowel movement takes a lot out of me. How much longer until I begin to feel better? My life has been on hold for 8 months. I can't do things I enjoy. My son is getting married in 2 weeks and I am desperate to feel better. Nothing will ruin that day more if I'm not well. Thanks for listening. 

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Welcome to the forum Easterlily,

If you want to get tested for celiac disease you need to be eating it for 12 weeks for the blood antibodies test and 2 weeks for the endoscopy.

(quote)

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

  • Prior to blood testing we recommend 12 weeks of eating gluten.
  • Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy.

(endquote)

***************************************

I know you are having bad symptoms, but if you ever want to be tested for celiac disease, now is the time to  do it.  The tests are unreliable enough, without trying to get a diagnosis with no gluten  in your diet.  Your doctor doesn't know what they are doing in regards to celiac disease testing.  If you decide to get tested after being gluten free for months, you will need to do the gluten challenge, which can cause even more unpleasant symptoms at that point.  Plus you would be doing damage to your body after it has started healing.

You don't need to eat a lot of gluten for the antibodies to stay active.

If your doctor isn't willing to give you the complete antibodies panel for celiac disease right away, (say Monday), try to find one who will.  He/she is making your diagnosis harder by not testing you before telling you to go gluten-free.

Your symptoms do sound like celiac disease.  Some things that might help your symptoms are avoiding dairy, sugar, and carby foods like bananas, potatoes etc.  Many processed foods are loaded with carbs.

Pepto Bismol can help some GI pain and irritation also.  Peppermint tea is good for helping to get gas out of the stomach.

Some people find eating their gluten challenge food is easier in the morning so the immediate symptoms are past by bedtime.  Others like to eat the gluten challenge food in the evening and sleep through the symptoms.

Edited by GFinDC
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Welcome EasterLilly :)

 

To second gluten-free's words above, this:

3 hours ago, EasterLily said:

My doctor has put me on a Gluten-free diet to see if my condition improves. If so, then we will take it from there.

is very annoying to read! I'm sure your doctor means well, but the time to try gluten free is after testing is complete not before. 3 days in means you should still be ok to get tested if you go back on to gluten. You mention a blood panel, is it possible you've already had a blood test for celiac? It may be worth calling your health practitioner and asking them to check. 

I know you are desperate for answers and to feel well and if gluten is causing this (which is certainly possible) then its the last thing you want to eat, but a diagnosis would be helpful both to you and your family. So do consider excluding it now whilst its easier. Once your off it and go back on, it can be more unpleasant.

Of course you can if you wish go ahead with the gluten free diet and leave diagnosis to later. If so, it's by no means unusual to feel upside down when you first remove it. My stomach was so noisy for weeks afterwards. 

Best of luck! You've found a good site and there will be plenty of support and info for you here. :)

 

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On 4/1/2017 at 3:14 PM, Jmg said:

Welcome EasterLilly :)

 

To second gluten-free's words above, this:

is very annoying to read! I'm sure your doctor means well, but the time to try gluten free is after testing is complete not before. 3 days in means you should still be ok to get tested if you go back on to gluten. You mention a blood panel, is it possible you've already had a blood test for celiac? It may be worth calling your health practitioner and asking them to check. 

I know you are desperate for answers and to feel well and if gluten is causing this (which is certainly possible) then its the last thing you want to eat, but a diagnosis would be helpful both to you and your family. So do consider excluding it now whilst its easier. Once your off it and go back on, it can be more unpleasant.

Of course you can if you wish go ahead with the gluten free diet and leave diagnosis to later. If so, it's by no means unusual to feel upside down when you first remove it. My stomach was so noisy for weeks afterwards. 

Best of luck! You've found a good site and there will be plenty of support and info for you here. :)

 

Thank you. I thought it was odd he didn't draw blood to test for celiac first. Especially since he said it was possible that it could be celiac or non-celiac gluten sensitivity. I would like answers as soon as possible for peace of mind as well as medical reasons. I don't want to add another few weeks of nausea  unnecessarily. I think I will call the doctor tomorrow and see if he will order me a blood test since nothing showed in the endoscopy. 

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On 4/1/2017 at 0:49 PM, GFinDC said:

Welcome to the forum Easterlily,

If you want to get tested for celiac disease you need to be eating it for 12 weeks for the blood antibodies test and 2 weeks for the endoscopy.

(quote)

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

  • Prior to blood testing we recommend 12 weeks of eating gluten.
  • Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy.

(endquote)

***************************************

I know you are having bad symptoms, but if you ever want to be tested for celiac disease, now is the time to  do it.  The tests are unreliable enough, without trying to get a diagnosis with no gluten  in your diet.  Your doctor doesn't know what they are doing in regards to celiac disease testing.  If you decide to get tested after being gluten free for months, you will need to do the gluten challenge, which can cause even more unpleasant symptoms at that point.  Plus you would be doing damage to your body after it has started healing.

You don't need to eat a lot of gluten for the antibodies to stay active.

If your doctor isn't willing to give you the complete antibodies panel for celiac disease right away, (say Monday), try to find one who will.  He/she is making your diagnosis harder by not testing you before telling you to go gluten-free.

Your symptoms do sound like celiac disease.  Some things that might help your symptoms are avoiding dairy, sugar, and carby foods like bananas, potatoes etc.  Many processed foods are loaded with carbs.

Pepto Bismol can help some GI pain and irritation also.  Peppermint tea is good for helping to get gas out of the stomach.

Some people find eating their gluten challenge food is easier in the morning so the immediate symptoms are past by bedtime.  Others like to eat the gluten challenge food in the evening and sleep through the symptoms.

Thank you for the information. I will call the dr tomorrow to ask for a script for the blood panel. As for avoiding sugary foods- I'm noticing candy, gluten free of course. Is causing more nausea, bloating and pains and diarrhea. I hate the thought of cutting out potatoes because they've been a safety food for my IBS and acid reflux. But I'll try anything to get this nausea to ease up. In fact I just had a handful of Dots and my nausea has intensified. ? They'll be going in the trash. They've never bothered me before though. I am so confused as to what is going on with me. 

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Do you know how many samples were taken to biopsy during the endoscopy?

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I am newly diagnosed and I dont have any advice for you. I just wanted you to know I am thinking of you. You sound so miserable. I hope you can get the blood testing done, that will give you some instant answers.

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