• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
0
Tiredsean

Keep Going Gluten Free Or Stop?

Rate this topic

Recommended Posts

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???

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.

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

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.

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.

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!

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!

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??

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

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?

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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?

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.

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.

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

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
      108,911
    • Total Posts
      943,459
  • Member Statistics

    • Total Members
      67,055
    • Most Online
      3,093

    Newest Member
    Carol Wendler
    Joined
  • Popular Now

  • Topics

  • Posts

    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
  • Upcoming Events