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:
    Support Our Content
    eNewsletter
    Donate

Newbee,


leeroyc

Recommended Posts

leeroyc Newbie

Hi Guys,

I thought I would post this up on the forum because I would like to see if anybody would be able to give advise on where I am at the moment.....I have intolerance to dairy, wheat, corn and barley.

  • I have constant issues with my stomach - I go to the loo regularly (some days can be 6/7 times a day) - when I feel really rough I go to the loo and feel better after. 
  • Chronic tiredness (at times going to sleep for 8 hours and waking up the next day wrecked - feeling like I could have another 8 hours sleep). 
  • When being out for a drink the next day I am extremely bad (I know people may say stop drinking - thats understandable and something I have started) but I do not drink alot.
  • Go to the loo and feel like I need to go more
  • Brain fog/Heavy head
  • But the biggest thing for me is Dizziness.

This has been going for approx. 8 years (Im 37). 

I have seen and paid alot of money to see ENT Specialists, my ears and hearing are fine - I havent got Menieres. I have scans  - no underlying illness or issues with the brain....then I read that being allergic to gluten or having an intollerance could make you dizzy or bring on vertigo. My doctor has prescribed me many tablets to try and rectify or help the dizziness but none work.

The more I read on Gluten the more I am convinced its the problem - but was wanting peoples opinion and advise....or instance why wasnt this picked up by my doctor?

I have decided to avoid gluten to see if it helps -  for the past 7 days I have only eaten fresh meat, veg and fruit and no alchohol, I want to see if it helps.

My normal diet would consist of bread, alot of pasta (3/4 times a week), chocolate for treats, red wine etc. Its just dawned on me I am eating all the things I shouldnt.

If this is the case and I have finally found the issue, how long until I should start feeling better? 

I would like to also add that the dizziness isnt permanent, it comes and goes and gets worse and then better but over the past  years its been a real problem for me.

Thanks for listening - Lee

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Welcome to the forum, LeeroyC!

If you truly suspect gluten as the source of your problems, experts advise getting tested for celiac disease first before going gluten free.  Your doctor can order the necessary blood tests.  

FYI.  It took me two years to feel really well after being on a strict gluten-free diet and avoiding cross contamination at all costs.   Healing time does vary for everyone.  

There are over 300 symptoms attributed to celiac disease.  It can be hard for doctors to catch.  

I wish you well!

leeroyc Newbie

Thanks for the response cyclinglady. I hope to get tests an see if I am correct in thinking gluten is my problem. The fact that I am intolerant to some of its make-up makes me feel I am right...we shall see.

in the meantime all I can do is eat well, avoid anything that I feel may aggravate the problem an see if this helps me.

Many thanks.

Lee

Jays911 Contributor

Lee, CL is right. Get tested, and keep eating gluten until you do. The tests won't work if you are gluten free. Your symptoms track many of mine.  Blessings. 

Good life Newbie

Lee:

By asking the questions that you are asking, you are on the right path!

Many people attempt to identify what they are sensitive to by eliminating one thing (or one group) of foods at a time. My own experience is that it is better to start with a week (possibly longer) of just one or two basic proteins and lots of green leafy veggies (oil, vinegar & fresh herbs okay, but no prepared dressings), followed by the addition of only one new ingredient at a time, every three-five days, to see how you respond to it. No processed foods are used, since they have way too many ingredients to track easily.

What worked well for me (since I knew I could tolerate these ingredients) was nothing but oatmeal, cinnamon, yogurt & peaches, plus two eggs for breakfast, followed by beef or bison and a mixed green salad for dinner.  Lots of lemon/water, too. Nothing else. I felt so, so much better after a week of this that I continued for a second week before slowly adding additional foods to my diet.

Adding back other foods, very, very slowly allowed me to learn that I was sensitive to gluten, corn starch, apples, grapes, cauliflower and a few other things.

It is so common to be sensitive to multiple foods, which is why eliminating one thing at a time works so poorly, and eliminating almost everything at first, before adding things back works much better.

Best, Jan

leeroyc Newbie

Thanks for the advise guys. At the moment it just seems that my dizziness and general fluctuation with my ears are tied to what Im eating....however like I say Ive been eating well the past 7 days, just meat, veg and fruit and Im not feeling the rewards, its like groundhog day every day, I also notice that when Im working long hours and maybe run down a little it flares up.

I was told this may be because 'this' is my weakness, whenever I find out what 'this' is I will be delighted - its the not knowing and not being able to deal with it because you dont know what it is.

Frustrating, by the looks of it there are alot of people in similar situations on the forum. I find it strange though that sometimes Im fine/good and then I go through periods of days/weeks of being really bad - every day is a struggle - brain frog, back stomach, dizzy, fatigue...then it slowly clears.

Im working away at the moment so hope to see the doctor because Christmas and see if I can get referred.

 

cyclinglady Grand Master

These are the celiac tests.  The catch is for the blood tests you have to be consuming gluten daily for 8 to 12 weeks.  That is pretty awful, but that is the way it is.  ?

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)

 

Let us know how it goes! 

 

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



Celiac.com Sponsor (A8-M):



leeroyc Newbie

Thanks so much for the details, wow 8-12 weeks. Patience is a virtue as they say! 

Good life Newbie

Especially when it comes to dizziness, don't overlook the effects of environmental allergens, like dust mites, molds, mildews and plants.  Meclizine, the active ingredient in common over-the-counter anti-nausea drugs, taken at bedtime, really helps me break through long stretches of dizzy spells.  Too, a good physical therapist can show you a position to take that helps with certain types of vertigo.

BTW, don't wait for an MD's confirmation of a dust mite allergy if you suspect your dizzy spells get worse when you are lying in bed.  Just go out and get a good hypoallergenic mattress cover and pillow cover (roughly a $45 investment that protects both you and your mattress for a long time).  You'll notice an improvement in both your sleep and your dizzy spells within days.  Another investment that was worth every penny when it comes to minimizing my own dizzy spells is a good HEPA filter in my bedroom.

Hope this helps!

leeroyc Newbie

Need to start seriously reading up on information, it seems I get worst the day after I've eaten something that I shouldn't. 

I get heavy ears, fluctuating in the ears an dizzy, I go to the loo an sometimes makes me feel better an the symptoms reduce. 

 

Im wondering if toxins in my stomach are reacting and my body's reaction are my symptoms....not forgetting brain fog!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...