Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Could This Be Celiac - Long List Of Symptoms - Please Help


marco

Recommended Posts

GFinDC Veteran
 
Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi Marco,

 

You could be having gluten withdrawal symptoms now.  Gluten proteins are similar enough to opiate proteins to interact with brain receptors.  So the can actually have an addictive effect on some people.  If it is withdrawal symptoms they should pass in a few weeks.

 

If it were brain/neural issues it can take months to resolve though.  It is more likely a withdrawal symptom since you are new to the gluten-free diet.

 

Doc Calls Wheat A "Perfect, Chronic Poison," Backs It Up With Lies - BlissTree

 

http://www.celiac.co...+gluten +opiate

 

 

 
Open Original Shared Link
BlissTree
We're not talking about gluten, so I'm not addressing people with gluten sensitivities and celiac disease. I'm talking about everybody else because everybody else is susceptible to the gliadin protein that is an opiate. This thing binds into the opiate ...
Open Original Shared Link CBS News
Link to comment
Share on other sites
marco Newbie

Hi Ginfin DC, thanks for all the advice.

 

I have been on the diet for over two weeks now, and srangely enough I have started to feel alot better in myself. My head is alot clearer and I feel more

postive and able to focus, So maybe this is gluten after all.

 

However a couple of things have confused me and maybe someone has the answer. The first thing is that I am still craving sugar and struggling to bring this

under control. It is not unusually for me to eat a family pack of 4 chocolate bars in one day. When i used to drink lager, I would come home from the pub and

eat a bowl of icecream and a packet of biscuits.

 

The second thing is I ate a bowl of gluten free oats this morning and have not had oats before and about an hour after eating them i got he old symptoms back

block ears, tingling around face blocked nose feeling of tightness inside the head, it's a really frustrating feeling not painfull but that drives you mad as it is so

unpleasant, hard to describe.

 

Anyway thanks for any help in advance.

Link to comment
Share on other sites
nvsmom Community Regular

Not all celiacs can tolerate oats. It is often recommended that you abstain from them for quite some time until healing has occurred, and even then they could present a problem. I have been gluten-free for ten months and I still haven't touched them... I have actually become used to not having them and no longer miss them.

As for the sugar, I have problems with that myself. If I go sugar free the cravings lift after a few weeks but they are back the moment I have an ice cream or a treat. I haven't found a solution yet.... Darnit.

Link to comment
Share on other sites
GFinDC Veteran

Hi Marco,

 

That's right, oats shouldn't be eaten for 12 months or more.  Around 10% of celiacs react to oats just like they do to wheat, rye, and barley.  So it's a good idea to avoid them for now.

 

I think it is easier to avoid sugar after you do it for a while.  If you get used to eating meats and veggies for most of your calories that gives you a more even energy release than a sugar rush.  Less bouncing back and forth between high energy and low.  Which means less tress on your body.  There are replacement sweetners available with low calories.  But I think the best thing is to just stop eating the sweet stuff.  Maybe you could try a salty snack instead?

Link to comment
Share on other sites
marco Newbie

Hi Marco,

 

That's right, oats shouldn't be eaten for 12 months or more.  Around 10% of celiacs react to oats just like they do to wheat, rye, and barley.  So it's a good idea to avoid them for now.

 

I think it is easier to avoid sugar after you do it for a while.  If you get used to eating meats and veggies for most of your calories that gives you a more even energy release than a sugar rush.  Less bouncing back and forth between high energy and low.  Which means less tress on your body.  There are replacement sweetners available with low calories.  But I think the best thing is to just stop eating the sweet stuff.  Maybe you could try a salty snack instead?

Thanks again, I will stay off oats as well. Yikes I think I may also have a problem with yeast extract, when I eat certain things without gluten I seem to have a slight reaction but not as bad as the gluten and the only ingredient it could be is yeast, come to think of it maybe yeast as that is in bread anyway, something else to think about I guess.

 

All the best Mark

Link to comment
Share on other sites
Dozey Apprentice

Hi Marco. i can't offer any advise about Celiac as I am new to it myself, but a lot of your symptoms match B12 deficiency. Have you been tested? It is easily overlooked and mis diagnosed. Hope you get some help soon.

Jo

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



marco Newbie

Hi Marco. i can't offer any advise about Celiac as I am new to it myself, but a lot of your symptoms match B12 deficiency. Have you been tested? It is easily overlooked and mis diagnosed. Hope you get some help soon.

Jo

Hi Jo,

 

Thanks for the reply. Yes i have read up on b12 and i am taking it at the moment as I felt that the symptoms were similar. Strangely i did have a celiac test before at doctors and it came back negative. TBH i have giving up on doctors as they have never helped me and have taken things into my own hands.

 

I have definately seem an improvement since going gluten free about three weeks now though, clear head when it was foggy, increased speed of thought and feeling lighter and more positive so there is a change in me.

 

I also used to get very emotional all the time, and this seems to be under control more.

 

I did read that when you have a gluten intolerance it stops you digesting vitamins and nutrients and this could explain vitamin B12.

 

I am not sure if this is in my mind but my hair seems softer and skin not as dry and flaky whether that could happen in 3 weeks and is

related i have no idea.

 

Anyway thanks for the support.

Link to comment
Share on other sites
GFinDC Veteran

Hi Marco,

 

 

Yeast extract is another name for MSG.  Some people react to MSG, so maybe that is the cause.

Link to comment
Share on other sites
Brandiwine Contributor

I grew up with and had all the symtoms you mentioned (and serveral more) except acidic eye fluid and rash. Since being gluten-free I haven't had much of these symtoms. I seem to be continuing to improve the longer I am gluten-free. My son showed a lot of the symtoms we had growing up he also has illness induced asthma (drs jerk me around about this) and the rash, behavior issues, he's a great kid and super smart but his moods are all over the place and he has my dislexia. I started him in a gluten-free diet two weeks ago and already see GREAT improvements! I don't need him to be diagnosed to know that he is most definitely doing better without gluten. I did go through pretty rough withdrawals, bread, pasta and cakes were my go to comfort foods before all of this. I am vegan I have to say that out of everything I cut out of my diet, gluten was the hardest! Hands down! But worth feeling better, I still have a lot of healing to do but still way better. I say stick with the gluten-free diet, it doesn't matter if you get test results with positive or negitive, some never get positive and get great results when gluten-free. It won't hurt to try, and will possibly help. It takes so long to heal, I feel the sooner you start the better. I feel the best positive test result you can get is after being gluten-free for serveral weeks and trying something with gluten, you should know by your reaction if you have a sensitivity. Not everyone agrees with this method, and that's okay, just my thoughts. Hope you feel better soon!

Link to comment
Share on other sites
marco Newbie

I have now been on the diet for 3 weeks and have been feeling much better in myself, I think I have made a good progress.

 

I have been very careful to read labels etc - however today i got some symptoms but everything i eat labels were OK but I knew something was wrong, so i went online and found that a chicken tikka sandwich meat from aldi had no wheat gluten on the label but it was listed on the manufacturers website which i found strange.

 

OK, is there anyone on the forums who is effected in a mental way by Gluten? When i had gluten through the Tikka, I had all the brain symptoms I get like the head siezures, like someone has filled my head with something or strange electric zaps and a solid feeling behind nose and even a feeling of being off balance etc.

 

This all happens really strong a few hours after eating this gluten, in this my imagination as I find it hard to believe that gluten can have such an instant impact in the head and brain, I mean i only had slight wind as well and no stomach issues.

 

Is it possible to have a problem with gluten that effects the mind more than anything else or could there be something else as well.

 

Many thanks in advance

Link to comment
Share on other sites
marco Newbie

I grew up with and had all the symtoms you mentioned (and serveral more) except acidic eye fluid and rash. Since being gluten-free I haven't had much of these symtoms. I seem to be continuing to improve the longer I am gluten-free. My son showed a lot of the symtoms we had growing up he also has illness induced asthma (drs jerk me around about this) and the rash, behavior issues, he's a great kid and super smart but his moods are all over the place and he has my dislexia. I started him in a gluten-free diet two weeks ago and already see GREAT improvements! I don't need him to be diagnosed to know that he is most definitely doing better without gluten. I did go through pretty rough withdrawals, bread, pasta and cakes were my go to comfort foods before all of this. I am vegan I have to say that out of everything I cut out of my diet, gluten was the hardest! Hands down! But worth feeling better, I still have a lot of healing to do but still way better. I say stick with the gluten-free diet, it doesn't matter if you get test results with positive or negitive, some never get positive and get great results when gluten-free. It won't hurt to try, and will possibly help. It takes so long to heal, I feel the sooner you start the better. I feel the best positive test result you can get is after being gluten-free for serveral weeks and trying something with gluten, you should know by your reaction if you have a sensitivity. Not everyone agrees with this method, and that's okay, just my thoughts. Hope you feel better soon!

Thanks for the reply, sorry to here that you have this as well. Did you ever get any effects on your mind, brain and like a solid feeling behind the nose. feelings of being off balance and clumsiness as described in my new post below, it seems that this problem effects my mind and sinuses more than my digestion etc which I find odd.

 

All the best Mark

Link to comment
Share on other sites
taynichaf Contributor

 

 

 

list two

Strange brain zaps - like an electric shock inside head that lasts seconds but is scary

feeling like someone is glasping the top of head pressure

pins and needles in feet and hands

sharp pain lower right hand side of stomach - stabbing pain

tension in shoulders etc

 

 

Yes! I had the "brain zaps" too! It wouldnt last long, but how i described it was my brain vibrating, then i would get a little dizzy... I havent had this for awhile, but its nice to know im not the only one! I wonder what it actually is though..

Link to comment
Share on other sites
marco Newbie

Well feel muggy headed today and very emotional, a bit of a coincidence as I ate gluten by mistake yesterday, it is starting to look like Gluten has been the problem all these years.

 

 

i read this:

 

Symptoms of gluten ataxia can range from progressive balance difficulties and unsteadiness on your feet to problems swallowing. You might have double vision, or even issues controlling your bladder. Your symptoms might come on slowly or might appear suddenly, but probably won't include gastrointestinal symptoms that could indicate Open Original Shared Link.

Link to comment
Share on other sites
GFinDC Veteran

Hi Marco,

 

Yep, people with the nueral affects like gluten ataxia often enough don't test positive on the GI antibodies.  They may not have any GI symptoms sometimes.  They can also be more sensitive to gluten contamination that most celiacs.  and it can take longer for them to heal their nueral issues than a gut issue does.  Nerves just plain grow slowly in all people.  B vitamins are supposed to be helpful for healing nerves.

Link to comment
Share on other sites
marco Newbie

Hi Marco,

 

Yep, people with the nueral affects like gluten ataxia often enough don't test positive on the GI antibodies.  They may not have any GI symptoms sometimes.  They can also be more sensitive to gluten contamination that most celiacs.  and it can take longer for them to heal their nueral issues than a gut issue does.  Nerves just plain grow slowly in all people.  B vitamins are supposed to be helpful for healing nerves.

Thanks again for the reply, struggling to understand this all.

 

I know I was glutened yesterday and got reactions about an hour after, however the symptoms around my head which can be described as tingling and solidness behind the nose and a feeling that someone is clasping your face with their hands, it is not painful but very annoying and it makes you feel like their is trapped pressure in the face, it is such an uncomfortable and annoying feeling and so frustrating and hard to cope with, like a mild kind of torture.

 

So this feeling then dies down and the following night it comes back with avengance and possible worse than the initial reaction, why would that happen the following night or is this the toxins leaving the system again, as I was very careful not to eat gluten again after this episode.

 

very confusing.

 

Thanks Mark

Link to comment
Share on other sites
GFinDC Veteran

Hi Marco,

 

You could be having actual pressure in your sinus cavities.  I've had pretty active hayfever symptoms before, and they can cause that kind of pressure.  Why exactly is  a good question though.  A+ ! :)  After you have been on the gluten-free diet for a few months, it gets to be easier to identify the foods that cause reactions.  It's just something that takes some time to learn.  That's why eating a reduced number of foods is good, as it makes the process of identifying troublesome foods simpler.  If it is sinus pressure that's a good thing, compared to ataxia.  You could try some anti-histamines to see if they help your symptoms.  That might give you a better understanding of what's going on.

Link to comment
Share on other sites
marco Newbie

Hi again,

 

Not been on here for a few weeks as testing the diet, there is a definate pattern here. I have been on gluten free now for 4 weeks and think I have finally stumbled

on the problem, I actually think it is an intolerance to Barley and not wheat etc.

 

Is this actually possible can you actually have an intolerance to barley and not wheat and other gluten.

 

The reason I think this is I have now accidentally eaten foods twice that have only contained barley and not wheat.

 

I have some gluten free cornflakes and today I had cornflakes, it is all i had eaten and within a few hours I had fullness in ears, blocked nose

tingling around head and pressure around face, now I thought how can this be as the cornflakes are gluten free.

 

Then I realised I had eaten Kelloggs cornflakes by mistake, look at the label and there is only Barley in there.

 

When I had a blood test it said that there was not a problem with wheat but would the test also cover barley etc.

 

Thanks for all the help to date and i hope that my experience can help others with similar problems.

Link to comment
Share on other sites
GFinDC Veteran

Hi Marco,

 

Celiacs react to wheat, rye and barley.  Ten percent or so also react to oats.  Many of us also develop additional food intolerances, like corn, eggs, soy, nightshades etc.  You could have reacted to barley in the cornflakes, or to the corn, or to both.  That's the  tricky thing about figuring out food intolerances, you can have reactions to several ingredients in a food, not just one.  One way to determine a food intolerance is to test it in isolation.  So, instead of eating a cereal with multiple ingredients, eat all of the ingredients by themselves, one at a time, on separate days.  Preferably you should eat a test food ingredient for 3 days straight.   Then if you are feeling ok, try another food ingredient.  So, you could eat plain corn for 3 days, not the cereal.  The thing is though, you are too early in the gluten-free diet to have a good understanding of reactions IMHO.  While your gut is healing, you can have varied reactions that don't seem to make a lot of sense.  The early months of the gluten-free diet are about taking it easy on your digestive system, and giving it food that is easy to digest.  There are many possible up and downs during healing that may not mean a whole lot, except that you are going through the healing process.  Every time you consume gluten it re-ignites the autoimmune attack, and that can takes weeks or months to settle down.

 

You can also have an allergy to foods, instead of or as well as intolerances.  Allergies can be tested by your doctor or an allergist.  Allergies are not the same thing as food intolerances or celiac disease.  They are caused by a different type of immune cell, IgE.  But it is possible to have both.

 

 

Link to comment
Share on other sites
carisima Newbie

When I wake up in the morning i never wake up feeling refreshed it is like being hit by a truck, really hard to get up every morning and always with the hangover feelings. I am on gluten free diet for only second day but my symptoms seem worse today very bloked ears and feel very tearful. Does anyone recognise these as withdrawl symptoms, is it normal to feel bad or worse for a period. Thanks for the help. I also forgot to mention there is alot of tension in my body and i have these really dark periods where I feel like there is no hope etc.

Marco, in another forum, I learned that this is usually the die-off of "bad bacteria" in the gut that feeds off the undigested carbs from gluten.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,507
    • Most Online (within 30 mins)
      7,748

    AngieMu
    Newest Member
    AngieMu
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • McNish
      If you're ever in the Peoria IL area - Queen of Squash is 100% gluten-free.   Pekin (just outside Peoria) Whiskey Taco is 90% gluten-free.  The owner's mom is Celiac so they get it!   Just let your server know.   https://thequeenofsquash.com/ https://whiskey-taco.com/
    • trents
      Do you have online access to your celiac panel test results such that you could post them? tTG-IGG is kind of a secondary test. A weak positive in that one could indicate celiac disease but since it isn't as specific a marker as the tTG-IGA it is not real convincing. You could also have NCGS (Non Celiac Gluten Sensitivity) for which there is no test. Celiac disease must first be ruled out. It is 10x more common than celiac disease and shares many of the same symptoms. Some experts believe it can be a precursor to celiac disease. The antidote for both is the same: total avoidance of gluten.
    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
×
×
  • Create New...