• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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.

Keep Going Gluten Free Or Stop?
0

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???

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites




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??

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,328
    • Total Posts
      935,514
  • Member Statistics

    • Total Members
      64,989
    • Most Online
      3,093

    Newest Member
    Jaf
    Joined
  • Popular Now

  • Topics

  • Posts

    • First degree relatives of celiacs should be tested every 2 years in the absence of symptoms & immediately if symptoms present since celiac can present at any age. Celiac affects every cell in the body & inflammation is common. My inflammation began in my lower back and the bend of my leg (on the back side of the knees). It progressed to literally everywhere. You name it, back, neck, arms, legs, ankles, hips, wrists, fingers. Excruciating pain as well as swelling. So excruciating that opiates didn't even phase it. I just had to bear it. I would take ice packs & use them until the area was pure D numb. You're never supposed to leave ice on that long but if I hadn't then I would have shot myself. I can not begin to describe the intensity of the pain. The last year before diagnosis, I was sure that within a year, I would be confined to a wheelchair for the remainder of my life. Now, 5.5 years gluten free, I can't tell you the last time I took a Tylenol or any other anti inflammatory. In fact, I'm not on any meds at all. Nothing.
    • Thanks for all that info and the links.  It would be such a relief if I could know what is causing the fever, and that maybe it will go away as I stay gluten-free.  Both my gastro dr and rheum dr said to still stay gluten-free even though I apparently don't have celiac.  They are saying to give it 2-3 months to see how I feel then.  My fever has been down to around 99.9 the past two days, instead of over 100 and 101 like it's been since February.  That is the most exciting thing so far.  My stomach is not as severe or bad, but certainly not great, and I don't feel out of the woods at all concerning that yet.  I still hope to feel a lot better as more time goes by without gluten....I hope.  I seem to get bloat and also discomfort in my ribs more in the evening, even if I ate the same thing at lunch.   I started a food journal.  I guess I need to keep being patient. My rheum dr wants to see the journal in October when I see her again. She said she loves detective work.  It sounds like we all need to become food and symptom detectives when dealing with this.  Now if we could only get an NCIS episode where they investigate how gluten can "murder" our stomachs, and figure out a cure for gluten issues, besides going gluten-free.  It actually hasn't been too bad so far, other than foods that you are iffy or unsure about with all sorts of weird ingredients listed in it.  The internet and this site here helps a lot with some of that.  Luckily there is a whole lot we can still eat, but corn and corn products are an iffy for me too at the moment, and my dr suggested trying to avoid soy, and that xanthan gum, and a few things like that. Only thing that has shown in my bloodwork so far is chronic inflammation that may mean an underlying autoimmune disease.  Ya, I've been hearing "it seems like something autoimmune" for the past few decades.  It'd kind of be helpful to figure out exactly what.  I'm so tired of being tired.  I am sure you all can relate to that.  You just want to wake up and feel good.  
    • HEB organics does not bother me at all. Their plain one has to be boiled before I can drink it so I tend to use it in moderation in cooking...it also has xantham gum which explained that issue. MALK gives me no issues (Local Only Brand I think). Used to drink something called Mooala but could not find it unsweetened after my UC dia.  Almond Breeze is next up but I can only drink about a cup of it before I start getting burping issues, silk bothers me the least but still causes some issues. Silk cashew is alright and I use it all the time with NO issues at all...but I use it in cooking and do not think I have ever used it without boiling it first either in a icecream base or mixing it in a soup, cheese sauce, or adding a bit to eggs for fluff.   Hmm there is one other brand of macadamia milk that dose not bother me and Good Karma Flax milk I have NO issues with....been a good 6 months since I had any though. http://malkorganics.com/products/   https://www.heb.com/product-detail/h-e-b-organics-unsweet-vanilla-almond-milk/1741526 ^ Two that give me the least issues  
    • Oh goodness me so do you guys bother to get histamine level diagnosed or do you just treat it as you did the food diary ? taking note of high histamine time of year/ season and diet into your seasonal food diet? I'm pretty good at rotating foods I've done that longer than I've known about my issues from a nutritional standpoint I rotated which is why until the gluten challenge derailed my immune system entirely. it was challenging enough to do that gluten challenge I am not really up for more testing. I have symptoms of IC, POTS, fibromyalgia, and now you reveal that yes histamine threshold are part of the celiac autoimmune party bag too. how do all branches of medicine not find this group the most intriguing group of people ever? Really?Or Do you just all avoid them and go on your merry way? Ennis - what almond milk can you drink ? the almond milk 3 we tried/ bought prior to making my own (had unlabeled ingredient  fortified and thickeners corn derived added. ) I was shocked to call and discover it had it in (not labeled as it was corn not top 8) it finally explained why the right elbow joint hurt but it was a small enough derived amount of derived  corn not to trigger the Full blast corn intolerance symptoms. For this reason and now the orange juice incident I'm really leery of unidentified corn or corn derivatives or highly processed any additive for they are prevalent in processed land.  
    • Yeah I have 2 stationary pedal bikes. I use one on the desk sometimes while watching a show and work out my arms. I keep one under the desk and pedal on it for hours a day, really helps with my restless leg issues and stress (just gotta keep moving or I start feeling like a panic attack is coming on trapped by life like a rat in a cage. If you need to know were to find the ground cocoa nibs look up crio bru, they sell it as a coffee replacement for $23 for 1.5lbs they have different origin and different roast levels so you can get different flavored cocoa nibs I get several and mix them up.
  • Upcoming Events