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New Here, Hoping for some guidance


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Old 01-05-2017, 07:39 AM   #1
NJMommy
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New Here, Hoping for some guidance

Hi all,

I haven't been diagnosed with Celiac, but have many of the symptoms and multiple other autoimmune disorders. My doctor doesn't want to run the tests. He basically stated symptoms are symptoms and if they go away with treatment what does a diagnosis matter.....He wants me to go gluten free for 3-4 weeks and see how I feel. Once I completely eliminate gluten, how long should it take to see if there is an improvement? And, if I've eliminated gluten, will any of the tests for celiac even be accurate? And last but not least, is there such a thing as a gluten allergy or intolerance but not celiac? If so, do I completely have to eliminate gluten or just stay away from large amounts of it in things like bread and pasta.

Thanks in advance for any help or information that can be offered.

 
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Old 01-05-2017, 09:15 AM   #2
SOE
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Re: New Here, Hoping for some guidance

Hi NJ Mommy, welcome to the boards.

There is such a thing as a gluten intolerance/allergy -- but you treat it the same as Celiac. You have to avoid all gluten.

If you want to be tested, you have to do it before you give up gluten, otherwise the test will not be accurate.

He makes a point about not needing a diagnosis if symptoms go away with treatment -- but if you have insurance, or want to pay for the tests, most people prefer having an actual diagnosis. Although for many people having an endoscopy does not always catch damage, so it's not the most reliable test.

It can be tricky to give up gluten. Once you start reading labels you will see it's in many, many things you never expected. Not just bread and pasta. It's in packaged food, mixes, dressings, medications, both over-the-counter and prescription (those are not labeled and are a completely different conversation).

You might start to feel better after a month, but for some people it can take 6 months or longer before they start to feel better. I have read that it takes 6 months from going free for the gluten to be completely cleaned out of your body.

I hope this helps.
SOE

Quote:
Originally Posted by NJMommy View Post
Hi all,

I haven't been diagnosed with Celiac, but have many of the symptoms and multiple other autoimmune disorders. My doctor doesn't want to run the tests. He basically stated symptoms are symptoms and if they go away with treatment what does a diagnosis matter.....He wants me to go gluten free for 3-4 weeks and see how I feel. Once I completely eliminate gluten, how long should it take to see if there is an improvement? And, if I've eliminated gluten, will any of the tests for celiac even be accurate? And last but not least, is there such a thing as a gluten allergy or intolerance but not celiac? If so, do I completely have to eliminate gluten or just stay away from large amounts of it in things like bread and pasta.

Thanks in advance for any help or information that can be offered.

 
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Old 01-05-2017, 09:29 AM   #3
NJMommy
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Re: New Here, Hoping for some guidance

Thanks very much for responding. I have another autoimmune disease that causes malabsorption. The last endoscopy I had showed that my stomach was fryable, so I already know there's not going to be too much of a change with another. I'm more concerned about what you mentioned regarding unlabeled gluten in meds and other things. From what I've read, celiac or not, once you're gluten free and ingest gluten the reaction can be much worse than the original symptoms. How does a person keep themselves "safe" from contamination?

 
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Old 01-05-2017, 10:32 AM   #4
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Re: New Here, Hoping for some guidance

I'll admit it's scary to begin with. I am still afraid in new restaurants. I have been both helped and protected in a restaurant -- and made sick.

It's important to read labels. You have to read every label, never assume. Because wheat is an allergen, it must be listed, and it will always be listed again in bold after the ingredients. There are other things to look out for like "natural flavors" because that is such a mixed bag.

If you search the internet, you will find that there are lists of gluten free prescription medications. Also, if you have a good pharmacist, they can help too. It took my pharmacy about 4 years to catch up, but now they take it seriously and help me when I need help.

It's all doable, but it can be overwhelming in the beginning. But it is worth it to get over the side effects / symptoms you are suffering.

 
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