Jump to content
  • 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

Symptoms


Iheartbostons

Recommended Posts

Iheartbostons Newbie

Hi everyone, I am new here and I just wanted to see what you all think about my symptoms. First I will start by saying that I have always had stomach/ bathroom problems since teen years. I went on the Atkins diet summer 2003 and lost 28lbs. Feeling good until March 2004. I have since reintroduced carbs except white bread. Well the past month or so I have been eating whatever I want and I feel worse than ever. Cold hands,pale color,nausea, fogginess, weak, sad and lately the worse yet the feeling I may faint. I had blood work done in March for anemia and whatever else they do for a checkup and everything came out fine. I have gone gluten-free for about a week and the first 4 days I felt great but now Im feeling bad again. Does anyone else experience the feeling of faintness. It is really starting to scare me. Its like I can be feeling great and the next minute I need to sit down. I dont even like to go shopping anymore(boo hoo)because Im afraid to be out and about. I also do not have insurance and would like to avoid paying out of pocket. Thank you for your help.


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



Celiac.com Sponsor (A8-M):



McDougall Apprentice

Everything in there sounds like me including the feeling of fainting, and the bad 4th-5th day. I feel much better today on day 8 but definately light headed still to put it mildly. Lemmee see "Cold hands,pale color,nausea, fogginess, weak, sad and lately the worse yet the feeling I may faint" yep same as me. My nausea is way better. Make sure you eat some carbos for strength, lack of carbos will make you want to faint and I know how it's harder to eat them now. Hope you feel better soon.

tom Contributor

If i were you, i'd recheck everything for hidden gluten.

Toothpaste, sandwich meat, mouthwash, pringles potato chips, vitamins etc. There's a VERY long list of things you wouldn't think have gluten but some do and some don't.

Iheartbostons Newbie

Thank you for you reply, do you get episodes? What I mean by that is I feel great and then out of no where I feel like all my blood has been drained(excuse the drama :D ) and the nausea comes then the sadness. Soon after I go through all the stages I feel better for awhile. Is there a list somewhere of "legal" foods and products I can use.

FreyaUSA Contributor

I'm mildly hypoglycemic (without diabetes as an added bonus, at least) and your reactions sound pretty typical of this. I can't let my blood sugar drop out or I'm a wreck. I generally don't eat very much at a time, but I have to have something pretty much every two hours. A small handful of cashews or a little natural peanut butter on a caramel corn cake are what I usually go for. Nuts and beans seem to keep me more even than most anything else.

Carriefaith Enthusiast

I've experienced the faiting feeling quite a few times. My faiting feeling usually comes when I am exercising or when I stand up quick. I haven't exprerienced it lately but I also haven't exercised in 3 months (doctors orders).

I don't know how to prevent it though. I take lots and lots of vitamins in hopes that it will help with everything that is wrong with me.

Hope you're feeling better soon :)

-Carrie

judy05 Apprentice

All of your symptoms reminded me of mine. For 9 months I was

afraid to out alone, afraid to drive in heavy traffic, I couldn't

go out to events and socialize. I always feeling like I might pass

out or get sick. Your anxiety levels are very high and my best

advice is don't push ypurself, try to limit your work if possible,

things do get better but it takes longer for some than others

especially if you've been sick a long time.

More than once I felt like I was going to "pass out " when driving.

Luckily I was able to get to the side of the road to let my husband

drive. It feels so good just to go to the supermarket alone and

know that I will be OK.

Another bad symptom was "brain fog". When you have it feels like

you are totally out of it, spacey, scary actually, and the only way

it went away was by giving up dairy. I also had to wear sunglasses

even on cloudy days, because my eyes hurt.

Most of these things have cleared up, but today when I got a bad taste

in my mouth I thought hmm what caused this? I think it was the

gluten-free margarine reminding me that I still can't tolerate soy or dairy.


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



Celiac.com Sponsor (A8-M):



dbuhl79 Contributor

I too have experienced similar things to what you've described. When the onset of all my symptoms hit, I was exhausted. I initially thought just from my constant bathroom runs, possibly being dehydrated. Even when I had a few good days, I would be tired. I lost my joy for shopping too. I'd be in Sam's Club or wandering around and after too long, I was wiped out. I felt light headed, woozy, exhasuted, and just plain not myself. Not something you need when you have to get Christmas shopping done right! :)

I'd check like others have suggested for hidden gluten. And, unfortunately going gluten-free isn't like a magic snap of the fingers and all your symptoms disappear the minute you stop eating Gluten. It takes awhile for it to compeltely be out of your system and for your body and immune system to come back to normal levels. At least that is my understanding (and we all know I'm not a doctor!!). I know I still have my bad days... then again, I need a lecture since I'm occasionally sneaking in gluten during moments of weakness. (Hey what can I say, those chocolate covered pretzels looked REALLY good!)

Good luck and don't give up. But since you don't seem to be "officially diagnosed" you may want to see a doctor if problems persist. Lightheadedness, fainting spells etc can be signs of other problems or the beginning of other illnesses. Please keep that in mind, we'd hate for you to miss something that could be prevented!

Iheartbostons Newbie

Although I am very sorry to hear this about you guys it feels good that Im not alone. I know everyone heals differently but how long did it take you guys to get rid of the doom and gloom feeling. One more question, If I make just one mistake (like today when I took a bite of my sons waffle) would that really be the cause of my dizzyness? I guess its time to see the doc! :o

dbuhl79 Contributor

Iheartboston,

I think reactions will vary per individual. Some people here have such severe reactions to even cross contamination (i.e., someone toasting white bread in a toaster, than you using the taoster for gluten-free bread can cause crumbs to cross contaminate). I've read stories of others reacting and being very sick from that. So that little bite could be the cause of it, unfortuantely.

tom Contributor
Is there a list somewhere of "legal" foods and products I can use.

My fav list is at Open Original Shared Link

Oh, .. . and . .. :blink: STOP BITING WAFFLES !!! :unsure::angry:

Iheartbostons Newbie

Thank you Tom for the list. I thought I have been doing so well and eating healthy salad with RANCH dressing all over it!!! no wonder I dont know what I was thinking! I need help with these lables. What are the hidden words that I should look for??

I LOVE waffles! just one bite! :rolleyes:

tom Contributor

Lucky for you that one of the 'best replicated wheaty foods' IS the frozen waffle. There are pretty many brands these days and i think all the stores we go to have them.

The key to them is letting them defrost a little b4 toasting, and they all say so in the directions.

Besides the great blueberry waffles in the morning, i really like T-joe's Banana ones w/ peanut butter as a late snack. (ahhh if Elvis were a celiac he coulda gotten away w/ 2 ingred instead of 3)

Haven't tried a single gluten-free waffle that i didn't like and i bet i've had 7 diff types. The Flax ones are also gluten-free, tho i haven't tried them yet.

FreyaUSA Contributor
Haven't tried a single gluten-free waffle that i didn't like and i bet i've had 7 diff types.

Lol! I just threw away a box of frozen gluten-free waffles because, imo and my daughter's, they were horrible! I love the cereal (my favorite!) but the Mesa Sunrise waffles are on my never to buy again list.

Oh, the flax ones are great! (As are the banana and the cinnamon apple, these three are the ones my kids all like the best.)

Barb Newbie

Hi everyone, I am new to all of this. About several months ago I started to notice changes in my stool, they became softer, smaller pieces and then around Nov 1, I got diahrrea and it has lasted a month until about 5 days ago. They did all the tests for parasites etc, all were normal. I lost 10 lbs. My one Doc suggested I try gluten free and I've been doing it for about 6 days. I am doing alot better but had a couple of days where I had many BM's next thing to diahrrea, I did eat some soy sauce on my rice which I've since discovered has wheat in it and also had milk, both those things may have made things worse again. I have an immune defeciency called Hypogammaglobulin anemia, low IgG, IgA and high IgM. I recieve IVIG (Immuno gamma globulin) every three weeks. I'm 53 years old, very active, outdoor work with race horses. I'm going for shoulder surgery on this coming Thursday, I was a little scared about all the diahrrea and weight loss heading into surgery but hopefully things will be okay. My Doc took some sort of blood test yesterday to test for celiac but maybe it won't be correct as I've been on gluten free for a week or so. I guess I'll have to go back on gluten for 3 months later on and have the biopsy.

I just wondered what you all thought about my symptoms etc. I too get light headed, and just feel weird, very low energy and do have quite a bit of stress in my life (marraige). I think I've actually had a couple of days since I started the diet where I've had alot of energy. I just wish I knew for sure what the heck is going on. Any comments would be appreciated. I'm tired of being sick and sure don't need to lose any more weight.

Thanks

Baarb

cdford Contributor

I have a love/hate relationship with these postings. It is so good to hear that I am not alone, but sharing all the symptoms can sound like a pity party.

It took me several months of strict adherence to finally get rid of all the sad feelings and diarrhea, but I began to see the changes after about 3-4 weeks. It also took me a while to figure out all the little stuff. I thought it was the stress of paying bills each month that put me down until I found out that I wasn't supposed to lick the envelopes.

With a little research, a lot of encouragement, and finally having to keep a gluten-free house (we have younger family members who would sneak non-gluten-free foods if they were in the house) we began to get significantly better. My daughter is now on only one medicine when last year we were spending hundreds of dollars at a time on her. My damage was much more severe so I may never completely get past it, but boy is it ever better.

There is light at the end of the tunnel...keep on researching and stick to the diet.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,816
    • Most Online (within 30 mins)
      7,748

    KTH
    Newest Member
    KTH
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.