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

New To This And Still Not Sure If It Is Celiac Disease


scaredblossom

Recommended Posts

scaredblossom Rookie

It might be helpful blood sugar wise to check it before you eat then at 1, 2 and 3 hour intervals after. Do this with each meal and record the findings and take them to the doctors office at your next visit. You can also ask your doctor to do an A1c which will show your BS average over a 3 month period.

If you can go with more whole food and less stuff like pizza, chips and soda for a while that would be a good thing.

Okay I'm being dumb right now despite being a Nurse (we're talking about me not a patient)define whole foods!!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Okay I'm being dumb right now despite being a Nurse (we're talking about me not a patient)define whole foods!!

Not a dumb question at all in this day of premade and processed and boxed foods. Whole foods would be fresh meat, chicken, fish, eggs, veggies and fruits etc. in their natural state rather than processed or premade. Like our grandparents used to cook. Some of us find it helpful to wait until we have healed a bit before we try too many special gluten free baked goods. Some are made with stuff like bean flour, sorghum, soy flour etc that may be hard to tolerate until you have healed a bit.

tom Contributor

Sorry you're feeling poorly again, blossom.

...

Also is it strange that I seem to be getting headaches when I eat any type of potatoes? Just seemed to notice getting a headache every time I eat potato products, maybe it's not related but it seems to only happen then!

I get the feeling this doesn't include trying a plain baked potato.

Which oil is used in potato chips makes a HUGE difference for me. Canola makes me dizzy so I usually have to skip anything that has the "this or this or this or this oil" since one is invariably canola.

BTW If at anytime I am rambling too much or need to start a new thread please let me know =}

...

Ramble away & we'll ramble back & if you have a new topic, or want a new thread to ask or comment on anything else ("is this bean flour supposed to smell like this?") it's all up to you.

And I'm sure ppl will keep replying in this thread while anything's still being asked or commented on.

The other new member, Pro, I thought might prefer his own thread. Heh, silly me, just checked through his PROfile & he'd already started one.

I think we use the term 'whole foods' as mostly non-processed. My 1-ingredient almond butter could be called processed compared to buying raw unshelled almonds, but it's a far cry from a couple inches of ingredients & processes in making a gluten-free cracker.

Sometimes I think of it as buying ingredients.

P.S. hehe I was slow enough finishing that Raven beat me to that last part! (Better, too)

Pro Newbie

I'm so sorry you had a rough day!! I could barely eat yesterday, I had about 3/4 of a small hot pocket at work around 10pm! It of course stayed down long enough for me to be past the 12am deadline for nothing to eat or drink for my tests today!! I'm hungry but afraid to eat!!

Thank you :D it's nice to have people who understand, and don't just write you off as exaggerating.

First off congrats on the wedding. Wishing you much happiness. Do keep eating gluten until your celiac related testing is done and then give the diet a good strict try. When you go for testing do make sure the doctor does stool testing to make sure that it isn't a case of food poisoning since these symptoms came on suddenly. Hope your feeling better soon.

Thank you! I was going to, but I just couldn't bare it any longer. It probably helps that I don't have health insurance either, and don't want to foot that much money to be told to eat gluten free :P

Pro, have you started your own thread? Not that you have to but it's easier when ppl ask questions like "Is your appt far off?"

I just started one, it is awaiting moderation.

The other new member, Pro, I thought might prefer his own thread. Heh, silly me, just checked through his PROfile & he'd already started one.

Not many people look at the introduction threads, so I am making one in this coping section. It is more in depth than my original post. Should be approved before too long. Very punny joke by the way :P

Sorry if I jacked your thread blossom. I hope you are feeling better now! :D

scaredblossom Rookie

Not a prob Pro :D The only prob I have with the whole foods thing is while at work....hard to get a good lunch put together! I have always had issues with dairy so just eating plain cheese is a no go, yogart would probably work though! Nuts have always made my stomach hurt and popcorn kernels! I hate hate hate veggies...the only raw veggie I'll eat is very crisp lettuce! Cooked veggies are limited to green beans with potatoes cooked in bacon grease mmmmm or corn on the cob (only in moderation though, kernel thing) :huh: So now what??? I took fresh fruit last night, some plain chips, and beef jerky and no headaches and sugar didn't do bad! Before eating it was 79 but an hr out it was 112 and two hrs out 149, three hours it was 102! It's so hard not to order takeout or eat junk from the vending machine (can't see the labels though so not a safe bet) I have never been one to pack my lunch!

Oh yeah I have been stressing big time over waiting on my blood work! I guess I previously ha failed to mention family history; my sister has been dx with Lupus and Colitis and urinary issues (including stones), my mother has Crohns and Colitis breast cancer twice and a slew of heart conditions, dad has DM and HTN, Paternal Grandmother died from breast cancer, and Paternal Grandfather bone cancer I think, Maternal Uncle died of cirohsis of the liver. I have wondered if I might have Lupus but idk, when I was younger I had severe sensitivity to the cold! I would get hives and blisters all over my body if I got too cold and my hands an feet would swell to the point they felt like they would pop! When i was diagnosed hypoglycemic the Dr said I react differently to sugar, almost like i'm allergic to it! I will spike up then crash hard and lower than most!! I just wish I knew what was going on in my body!! I'm only 34 and most of the time I feel in my 80's!! :(

scaredblossom Rookie

OMG YOU'RE KIDDING ME RIGHT!!!! Excuse the truthfulness, I have diarrhea so bad it's like a faucet being turned on and and vomiting again, WTHECK is wrong with me?????

ravenwoodglass Mentor

I don't have a lot of time so a couple brief lunch ideas. How about a hard boiled egg and some fruit, cold baked chicken and fruit, some gluten-free lunch meat rolled with a piece of lettuce or left overs from dinner the night before as a couple examples.

Maybe start a thread asking for lunch ideas as many of us do have to deal with this.


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



Celiac.com Sponsor (A8-M):



scaredblossom Rookie

Well figured out what it is, didn't even think to check for a warning label on the beef jerky, I only checked ingredients and it was ok but at the very bottom it said contains wheat products and soy!! Been sick all day at work and kept eating it cause I'm starved!! I have ate everything I brought with me but applesauce and chips and what's left of the jerky...God I feel dumb!!

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. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    2. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748

    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    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

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.