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
      130,282
    • Most Online (within 30 mins)
      7,748

    Neup
    Newest Member
    Neup
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      All I can say is this site is great!
×
×
  • Create New...