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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.

Keep Going Gluten Free Or Stop?
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16 posts in this topic

It's been 1 1/2 months of me going gluten free trying to find the reason why my muscles are in pain and tense.Also other symptoms like cold hand and feet,light sensativity sometimes,Dizzyness etc.All symptoms are still present which leads me to believe they aren't gluten related or dairy since I stopped that to.Im now leaning towards nightshades (solanine poisoning) ,egg ,chicken and caffeine.Caffeine makes everything worse instantly which leads me to believe it also may be a caffeine intoerance/sensativity.When I pop antihistamines my symptoms drop off except I get tires thoughts???

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Have you had your thyroid checked? Could cause the same symptoms (cold, fatigue, muscle aches) Just a suggestion.

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Yes I had tsh free t3 and t4 checked all well within normal.I thought the same thing.Most of my symptoms follow hypothyroid except weight loss which is mainly my massive diet change going gluten free/dairy free/ junk food free.The next item after that flows with all my symptoms is a food sensativity given all symptoms listed above plus sinus problems.My muscles used to be always tense not sore,since I dropped my coffee intake to one super small cup a day they now ache but aren't tense.This is why I'm now leading to caffeine,or egg/nightshades .Ive been echo scanned entire abdomen and kidneys, mris,thyroid tests,diabetes, X-rays of lungs,kidney blood tests for everything and more snd more they can't find anything.Last option I have once I weed out food is Lyme disease which in Quebec is possible.Nightshades is a 90 day trial however to flush out solanine poisoning so it will be a long run.I have a Celiac question :if I lost huge sums of weight is this a sign I am celiac or is it normal no gluten = weightloss

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Some people do lose a lot of weight from unDxed celiac, yet some do not.

And yes, many people can lose weight initially when they give up breads. pastas, wheat-filled goodies, but once the gut starts absorbing nutrients again, weight gain can occur.

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I think you might as well get tested for Lyme while continuing the gluten-free diet. In Alberta, those Lyme tests can take weeks to get back, and I think you should give the diet a bunch of more time. 

 

I have/had pretty severe joint pain on and off for years; it would flare up badly, last a few months and then hang around as stiffness. It would be bad enough that i could not open bottles, holding toothbrushes was difficult, I and couldn't get my left arm above my head. After eating gluten-free 6 months my joint pain is going away. I have some stiffness and weakness left but the pain is gone.  It took a long time for the gluten-free diet to have any affect for me (I'm assuming it was the diet anyways-  lol).

 

As for your question, it is not uncommon to lose weight on the gluten-free diet. My theory is that it's weight from inflammation, based on where I lost my weight. In my first two months gluten-free I lost over 15 lbs which is really bizarre because I was eating more junk food, and more food overall, at the time. For the last few weeks I have been accidently glutening myself with chocolates that I thought were gluten-free (savouring one chocolate every few days). I wasn't having a severe GI reaction so i didn't really clue in (thought it was a flu) but now I am bloated and puffy looking again; I look like I gained 15 lbs in the past 3 weeks.... I think it's inflammation.

 

Best wishes to you.

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I agree. I never like to say how long it has taken me to get relief from the excruciating muscle and bone/joint pain I have from celiac because

I know I am not the norm. Most people see significant improvement in weeks or even a few months. I'm 2 years post-DX and still struggle, and I have had intense physical therapy and massages all this time. 

 

I was tested for Lyme 4 times (all negative) before an infectious disease specialist finally said he felt this was not a contributing factor to the pain I had, but

they kept testing me anyway. You should at least rule it out.

 

Symptom abatement when taking antihistamines could mean you have some food  allergies, different from a gluten intolerance. 

 

Everyone is different and you may just need to be patient to see more resolution of symptoms. Hang in there!

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Yeah I'm gonna call my doc and get tested for lyme.Then ill back off caffeine and nightshades and still maintain my gluten free diet.I won't cut eggs yet simply because I actually need to eat.I checked fibro but where I hurt doesn't reflect fibro points.I do get real muscle knots in my upper back and pain,buttocks and facial muscles,outter shoulders all at random times etc, the light sensativity and cold hands and feet are also random but usually sametime as pain.What a pain in the butt this food sensativity is geez!

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Yeah I'm gonna call my doc and get tested for lyme.Then ill back off caffeine and nightshades and still maintain my gluten free diet.I won't cut eggs yet simply because I actually need to eat.I checked fibro but where I hurt doesn't reflect fibro points.I do get real muscle knots in my upper back and pain,buttocks and facial muscles,outter shoulders all at random times etc, the light sensativity and cold hands and feet are also random but usually sametime as pain.What a pain in the butt this food sensativity is geez!

have you had vit/min levels checked??

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Yes iron,b12,calcium,magnesium,folate acid etc s slew of others all well within normal snd b12 off the charts because I supplenented which I stopped,d 3 as well high

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Yes iron,b12,calcium,magnesium,folate acid etc s slew of others all well within normal snd b12 off the charts because I supplenented which I stopped,d 3 as well high

Did you stop the B12 for at least 4/5 days before the test?  you want the test done on a "steady state" level.  What were the numbers?

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Range 179-660 I was at 874 .I didn't stop dosing before the test though.However if let's just say my B12 would have been low without dosing I'd understand feeling like crap.But since they were so high and I still felt like crap I guess it isn't b12.What annoys me the most about whats going on is the irregularity of it!! Sometimes I feel almost totally normal ,muscles,sinuses,stomach all just fine.Then it will either creep into me like stiff neck,soreish back,dizzy,sensative to light,sinus pain,post nasal drip,soreish face ,and fatgue.Then over the next few days buttock pain,leg pain sometimes,muscle tension etc even itchy anus(which I've been reading is a symptom of food sensativity god knows why) and tender under left rib. 2-3 days later sometimes a week I back off eat chicken ,fish,veggies,water,fruit especially babanas and my body weeds out one symptom at a time until I'm normal again. Or after two major hits ill get fatigued almost instantly,go to bed wake up anxious,throbbing sinuses,upper teeth hurt,shortness of breath,super cold hands and feet,tremble a bit, burning muscles in back,legs ,heart palpatations etc.and yet again takes inside a week to reset my body.My BM usually smell god awful after these episodes,during I'm usually constipated ,its very tiring being in the dark.What bothers me is eating fresh all the time is causing me significant weight loss.

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Range 179-660 I was at 874 .I didn't stop dosing before the test though.However if let's just say my B12 would have been low without dosing I'd understand feeling like crap.But since they were so high and I still felt like crap I guess it isn't b12.What annoys me the most about whats going on is the irregularity of it!! Sometimes I feel almost totally normal ,muscles,sinuses,stomach all just fine.Then it will either creep into me like stiff neck,soreish back,dizzy,sensative to light,sinus pain,post nasal drip,soreish face ,and fatgue.Then over the next few days buttock pain,leg pain sometimes,muscle tension etc even itchy anus(which I've been reading is a symptom of food sensativity god knows why) and tender under left rib. 2-3 days later sometimes a week I back off eat chicken ,fish,veggies,water,fruit especially babanas and my body weeds out one symptom at a time until I'm normal again. Or after two major hits ill get fatigued almost instantly,go to bed wake up anxious,throbbing sinuses,upper teeth hurt,shortness of breath,super cold hands and feet,tremble a bit, burning muscles in back,legs ,heart palpatations etc.and yet again takes inside a week to reset my body.My BM usually smell god awful after these episodes,during I'm usually constipated ,its very tiring being in the dark.What bothers me is eating fresh all the time is causing me significant weight loss.

874 is not all that high, and was not a real measure of your 'steady state'.  keep up the same or higher dose for a while longer.  Your bowel issues sound like something is "getting you"  ?another sensitivity, hidden gluten?

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A lack of calcium can cause charlie horse type cramps in the body :unsure:

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I need to have B12 levels around 1000 to feel OK. But the level itself isn't that important, If I drop from 1000 to 900 I feel just as rubbish as if I drop from 200 to 100.. In any case I like to hold it steady at 1000 because that's what works.

 

Vit D, you should try hold that at 120-150 but certainly over 100.

 

I used to have knees so sore I couldn't walk properly. They have been 100% perfect since I stopped eating gluten and got my Vitamin levels sorted although in the end the major problem for me is yeast not gluten as such.. but its hard to have a grain without yeast on it so I don't eat grains at all now.

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Antihistamines also suppress the immune system - so if you are having autoimmune symptoms it could relieve some of them.

Last winter I was glutened one two many times and went into a tailspin, plus juniper/cedar season...and after taking antihistimes for a few days I could feel the difference. I had to continue very low doses (half adult dose every other day) for a few months.

This year, no gluten and can clearly tell the difference between autoimmune symptoms and allergies. And oh boy is the juniper BAD this year. Ugh!

That's the long explanation if why you may feel better on antihistimines. It may not be a food allergy, it may be dampening your autoimmune reaction.

Or it may be a food or other allergy.

It's hard to tell, usually. Takes time, I think.

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Thanks for answers ill agree its tuff and my hats off to everyone who has and is struggling with celiac,food intolerences.Ive kept up me supplements ,and will continue my food testing journal.Im trying to get an appointment for lyme testing but in quebec that's gonna be a challenge! I've also taken oil of oregano 75% crevaol which is a thermo nuke for parasites and bacterial it also boosts the immune system.I feel less tired with it anyways.Im just hoping its not a nightshade allergy especially potatoes, I eat industrial quantities of them and can never get enough its my favorite food.If I figure this out ill repost maybe ill help someone else through my endless testing

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    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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