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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Nearly Two Months Gluten Free - Feeling Worse :(
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6 posts in this topic

So the very first time I went gluten free was the best week of my life. I felt energised, happy, motivated and so so HEALTHY.

 

Then, my doctor told me I had to eat gluten prior to my endoscopy, so I ate pastas, bread, pies etc. three meals a day for five days prior to my operation. I'm really angry with my doctor because I didn't realise that I wouldn't have to do that if I was planning on getting the endoscopy within three months (because it takes that long for any damage to heal).

 

Anyway, I get diagnosed with Celiac Disease and go back to my gluten free diet. It has nearly been two months since then, and there has been no improvement whatsoever. I'm back to being moody, depressed, unmotivated, weak, tired, bloated, farty, pimply, and I even have issues that I never had before like extreme diarrhea.

 

Has anyone had any experience with going on a gluten challenge after initially being gluten free? I think it's a bit different to being glutened, because usually when you get glutened it's just a small amount so you recover quite quickly. But what about when you purposefully ingest a large amount of gluten over five days? When can I expect to feel better??? Please reply :)

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Hi Kates77, I really do understand ... last October I had positive blood tests for celiac so I went gluten free for about 4 weeks (i felt fantastic) but unbeknown to me, I had to have an endoscopy so i had to re-introduce gluten. My endoscopy date got changed twice so I had a miserable christmas as I was trying to hold out until the endoscopy date on 4th Jan. Anyway, in the end they stopped procedure as I was trying to pull tube out but recently confirmed dx due to gene test etc.

For the first 3 months gluten free I was really miserable, spacey, no energy, brain fog, grouchy tummy, flu type symptoms much worse than ever before. I did have a drastic improvement in my vision and itchy scalp within the first 4 weeks but that was all.

I'm now finally starting to see improvements but boy i really know it when ive been glutened. Along the past few months Ive discovered other food intolerances like soy, coffee and dairy and im keeping up with my vitamins, probiotics and digestive enzymes so maybe im now heading in the right direction :) . Have a look at the newbie101 thread.

I've just come back from a mad 80s fancydress weekend and my energy levels kept up with the rest of them :) . I even braved the gluten free food on offer as there was one chef who seemed really keen and knowledgeble to get it right. Infact, when I got home I glutened myself !!

Also, I don't think at first, I was taking it serious about cross contamination, but have since learnt I must be sensitive afterall.

It takes time and patience and they'll be ups and downs but eventually (Im hoping), they'll be more ups !

Good luck

Edited ..to correct my silly spelling mistakes!!

Edited again... just realised, when I mentioned about me braving the gluten free food in a restaurant. That is NOT good advice, please avoid eating out if you possibly can. Try to get used to making your own food (simple wholefood ingredients).

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What was that about doctors pledging to do no harm?  Anyway, I'm really sorry you guys.  My thinking is that you can heal faster with a super pure diet of produce and unprocessed meats and then add those other foods after you are feeling better.  Keep a food/symptom journal and you should be able to notice additional food intolerances too.  Also as mentioned above, you can eliminate soy and dairy during this time.  You can try adding them back later.  Hopefully with a really good diet, you can get better in a couple of weeks.  I am one of those super sensitives, and that works for me.  I am now able to eat diary and my only other food intolerance is oats.  I hope that you feel better soon.

 

One great thing is that you know that you responded to the gluten-free diet initially, so that you know that you are on the right track.

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Hi Kates77,

 

People do tend to become more sensitive after they have been gluten-free for a while.  You may need to really look close at everything you are taking in, including vitamins and meds, drinks and anything else.   Getting better may take some real basic simple foods for a while.  No or very little processed food can help.  Low sugar and low carbs too.  Recovery from celiac disease damage can be more like a marathon than a sprint.  It takes times and constant vigilance until you get it down.  But recovery is a nice thing when it happens.  So keep going! :)

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Thanks guys! I really appreciate the advice. Hopefully I feel better soon :) And good luck to you all on your Gluten-Free journeys :)

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So the very first time I went gluten free was the best week of my life. I felt energised, happy, motivated and so so HEALTHY.

 

Then, my doctor told me I had to eat gluten prior to my endoscopy, so I ate pastas, bread, pies etc. three meals a day for five days prior to my operation. I'm really angry with my doctor because I didn't realise that I wouldn't have to do that if I was planning on getting the endoscopy within three months (because it takes that long for any damage to heal).

 

Anyway, I get diagnosed with Celiac Disease and go back to my gluten free diet. It has nearly been two months since then, and there has been no improvement whatsoever. I'm back to being moody, depressed, unmotivated, weak, tired, bloated, farty, pimply, and I even have issues that I never had before like extreme diarrhea.

 

Has anyone had any experience with going on a gluten challenge after initially being gluten free? I think it's a bit different to being glutened, because usually when you get glutened it's just a small amount so you recover quite quickly. But what about when you purposefully ingest a large amount of gluten over five days? When can I expect to feel better??? Please reply :)

Oh goodness. I am so sorry to hear that! I am however glad to see your post as I am experiencing a very similar thing. My difference is that I have been gluten free for almost 3 weeks and I am feeling worse and worse but same symptoms as you. I just want to go eat some real good bread and say "to heck with it" just to feel normal again.

 

Please let me know if I can be of any support for you! 

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