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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

When Did You Stop Getting New Symptoms?
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9 posts in this topic

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nvsmom    332

I have had some ongoing health problems for many years that I am trying to find answers for. I am a serologically diagnosed celiac who has been gluten-free for 11 months. I have hypothyroidism for which I have been trying to reach an ideal treatment for about 9 months. I also previously suspected I had a rheumatological problem but a rheumy has ruled that out and says my lingering symptoms are due to my celiac disease... I'm not sure if I believe her yet. :rolleyes:

 

So, I was wondering when you stopped getting new symptoms, or slightly altered but re-occurring old symptoms (like joint pains in different joints or flu-ish feelings and malaise that present in different ways) after being on the gluten-free diet for some time?

 

During my gluten-free time, I have had new and increased periods of alopecia, joint pain/arthralgias, facial rashes, periods of deep fatigue/no "get up and go", as well as periods where I get flu-like and achey but I never actually get sick (like I am fighting the virus for a few weeks and then it's gone). For the past few months I have had periods of low level nausea, unhappy feeling stomach that I never had before I went gluten-free - it's almost like I feel when I read in the car but not quite.

 

Most of my GI symptoms cleared up in the early weeks, as did my migraines. I had great hair regrowth for a while and then went through a bad patch - I am now regrowing again and have little 2" spikes of hair all over my head. I wear a lot of hats. LOL

 

During my gluten-free time I felt really good for about 1/4 to 1/3 of the total time; the good times happened in a couple of month or two long periods. The rest of the time is not so great for various reasons (sick feeling, pain, stomach ...wierdness).

 

I am dairy free because I know it bothers me, and I am largely processed food free. I know I have not been recently glutened, nor am I getting repeatedly cc'ed. I eat out only a few times a year. I think I may have another food sensitivity because my Vegan protein powder has caused some old GI symptoms, but that was easy to cut out of my diet and it's ingredients are not items I eat in other foods often. (I am not sure yet what is causing the issue with that but I haven't had the old GI symptoms since stopping that.)

 

Some of you celiac veterans have generously told me of your experiences and offered support, and that has been very helpful to me in accepting that healing could take years (sigh :blink: ) but I would still love to hear others exepriences so I can try and fit myself into the general celiac experience... I'm guessing that I'm healing slower than average.  LOL ;)

 

Thanks.  :)

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gatita    32

Funny you mention this! After 10 months gluten-free, my guts are feeling almost pretty darn good... but this week I am super itchy ALL over! Not DH, just bumps and redness and massive itchiness. Where the heck did that come from? True, maybe it's not gluten-celiac-NCGI-whatever-related, but I can think what else would cause it.

 

So yeah, I 'd love to hear the answers you get to this, too. ;)

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alesusy    6

Yes, I am 5 months gluten-free and while I'm ok for a good part of the time, I haave often "new" symptoms or recurrence of old ones, but with slight variations...

 

Mainly: gut problems and D - blurry eyes, almost as if my vision has gone down - periodically aching legs - itchiness particularly on legs, not DH and no rash, or at least, very moderate rash, just itching - brain fog - slight nausea - and dizziness which may come from neck problems...

 

Now - my point is, I am not sure at all these things are coming from Coeliac. I'm lactose and gluten free . I may suffer from some CC (pet food etc) .  Or anotheèr' food sensitivity, but I don't know what. Or this is just the way I'm made.

 

But I remember another era of life when I did NOT have these problems. I'm going to hang in there and hope that I'm going to heal and keep feeling better and better. I'm going to see an eye doctor and if everything is ok, well, you know, I can only keep on living as if everything were all right. My doctor told me I have to wait at least 12 months and possibly 18 before I'm fine again, and if I am not by then, THEN we'll start investigating other stuff. It sounds reasonable, because I do not know how long my gut has been suffering - I had symptons for three/four years but I might well have been sick before then - nor what rhythms my body will take to get back to 'normal' or to a normal functioning.

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nvsmom    332

I am not sure my symptoms are from celiac either. They could be.....I think I was an undiagnosed celiac for a minimum of thirty years so I'm sure I messed up some stuff along the way.

It is trickier to figure it out when the symptom is not coming from a "glutening" but just showing up for no good reason, or because I did too much, or just spent too much time in the sun.... I need an owner's manual. lol. ;)

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GFinDC    609

Hi Nicole,

 

Some of your symptoms match up with hypothyroidism.

 

http://www.mayoclinic.com/health/hypothyroidism/DS00353/DSECTION=symptoms

 

Joint pain can also happen with nightshades and soy.

 

I take raw thyroid capsules.  If I stop them for a couple weeks my joints start to hurt.  Might be something to look at.

 

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nvsmom    332

Hi Nicole,

 

Some of your symptoms match up with hypothyroidism.

 

http://www.mayoclinic.com/health/hypothyroidism/DS00353/DSECTION=symptoms

 

Joint pain can also happen with nightshades and soy.

 

I take raw thyroid capsules.  If I stop them for a couple weeks my joints start to hurt.  Might be something to look at.

 

Thanks Paul. :) You could be correct. I do have hypothyroidism and am not yet in that "sweet spot" for hormones yet after 9 months of treatment. I am retesting and adjusting thyroid meds every two months. I think I am getting closer, so only time will tell for that.

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If your problems are being caused by what you are eating you can figure it out by keeping a food/symptom journal and doing challenge/elimination diets.  Keep track of the source of the foods and not just the ingredients.  That can indicate possible cc as well as other food intolerances.  Eliminate for a week and then reintroduce.  This has helped me tremendously.  It takes a lot of patience and perseverance though.

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Em314    7

Funny you mention this! After 10 months gluten-free, my guts are feeling almost pretty darn good... but this week I am super itchy ALL over! Not DH, just bumps and redness and massive itchiness. Where the heck did that come from? True, maybe it's not gluten-celiac-NCGI-whatever-related, but I can think what else would cause it.

 

So yeah, I 'd love to hear the answers you get to this, too. ;)

I'm getting the same thing lately... but I also live in an area where the major pollen season is underway.  As in, some days, things left outdoors undisturbed turn YELLOW overnight.  I'm cautiously optimistic that that may be part of it, for me anyway, seeing as I already know for sure I have environmental allergies.

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GottaSki    459

You know my story...I'm in the how the #$%#*$% long is this going to take to heal category...but there are some that took longer than I.  Thankfully, most heal within the first year.  I take joy in knowing that and do hope you see great improvement in the coming months Nicole and everyone else around these parts.

 

Great Thread!!!

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