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

Not Sure What To Do?

aLayla

Recommended Posts

aLayla Newbie
aLayla
Posted

Hi!

Very happy I found this forum... Sorry if this isn't entirely coherent, not really sure how to ask this. :)

I don't know whether to wait and eat gluten for a couple of months to get tested for celiac proper, or just go gluten-free and/or lactose-free? (I seem to feel better without it?)

I've had some troubles for the past 4 years or so, okay, had problems before too, but not so big (depression/dysthimia/being bipolar-ish/anxiety, I read a lot of self-help books :) and yup, they helped quite a lot, still, I felt a bit 'off').

In 2006 and especially in 2007 after some stress and other things I developed hyperacusis (sound sensitivity/collapsed intolerance to sound), I also had some backache which got better inbetween, the hyperacusis got better too but still not completely okay..

2 or 3 years ago my doc didn't think celiac a possibility, as I didn't have diarrhoea then. Then I developed it (IBS? maybe just from stress), it's better now again.

After several other tests for what could cause hyperacusis were negative (ENT, Lyme) doc now said to test for Celiac to rule it out at least.

Trouble is I'd need to wait 4 or 7 months (depends on hospital) to just get to see the specialist, then 2 months or so to get tested.. (It would be for free, but I'd need to wait and eat gluten until then??)

I find I feel better when I don't eat so much gluten... The brainfog etc, aargh! After pancakes or such, I just feel sleepy.. (and like my brain is 'off'...) Especially if I eat gluten with all meals in a day, I feel quite 'useless'.. I ate gluten for 3 days (pizza, sandwiches..) and almost fell ill..

Other symptoms: occasional extreme tiredness/fatigue, 'laziness' (lack of inspiration/motivation), feeling scattered, difficulty prioritizing or deciding, being ADD-ish or OCD-ish (can be from mineral/vitamin deficiencies too, and too much computer/too little exercise.. trying to cut back on computer time..)

Also sugar/sweet drinks/juice seem to give me mood swings.. (complete with crying in improper situations and such!!)

I seem to get 'hangover' the next day after caffeine too (?)

Is it possible to not eat gluten for a month or a few and only eat it like one or 2 months before the tests? And how much do you need to eat every day? (Information on that seems to differ?)

And when is the best time to eat it?

I feel best after a gluten-free lunch, and if I eat bread etc for snack and before sleep, I find it really difficult to wake up. Like need up to an hour to just get my body to get up. If I ate eg pumpkinseeds(=lots of magnesium and zinc) before sleep, I found it easier to get up...

I was gluten-free and milk-free for a few months in the past and felt better, then ate gluten + milk again (with supplements like magnesium etc, and felt better, hyperacusis and how I felt improved), then stopped supplements and ate everything (out of desperation, family was nagging and my mild scoliosis got worse, I also tested for bone density: result - osteopenia, and had problems with supplements, so I started eating milk again), now wondering if to get tested or not..

So if I'd go gluten & milk-free again, it's not a problem how to have discipline, it's a problem how to get enough other healthy minerals though (for okay bone density).

I was gluten & milk-free with lots of protein/meat before, and apparently that's not so good for calcium/bones.. I was a vegetarian before, but started eating meat and felt fab (except for joint ache/backache) so I had to back off the meat a bit, now only eat it about 2x a week or so.. (Rheumatism/gout in the family, we live near a chemical factory too..)

Had allergy to food additives as a kid already, have stayed away from them mostly. May have multiple chemical sensitivity too, really hate artificial chemical smells etc.

I'd have to wait 4+2 or 7+2 months or more to get tested.. I don't want to be brain-foggy or bipolar-ish all that time!! (Mood swings, grr!!)

I don't want to be 'useless' for the next 6 - 9 months-??

I'd like to work on some eco projects and other stuff that would require quite some mental clarity and focus... And ideally start making money again..

The family would prefer me to get tested, to take it more seriously.. Really hate the idea of scopes.. Can gastroscopy damage vocal chords?

Is gastroscopy enough? (Or would colonoscopy be needed too?)

I know it's good to get tested because of possible cancer and taking it more seriously, even with small amounts etc. (Both by self and others..) I might enquire how much it would cost to do it sooner, hmm.. Though if I don't have c. and other additional tests might be needed, what then? (Limited funds.)

Does it make sense to do the mini self-tests? (cheap & affordable..)

If properly tested, how much gluten would I need to eat every day? Or could I just be gluten-free for three or six months (depends where I'd get tested), and then eat gluten for one month? It's mind-boggling! not sure what to do!! :) Any thoughts?

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

Celiac.com Sponsor (A8-M):


aLayla Newbie
aLayla
Posted
  • Author

Okay, apparently this was too long or not coherent enough?

I will just use this thread as a sort of 'journal', to keep track of what I learn on these forums and elsewhere...

Apparently if you can stick to the diet you can do it anyway.. without tests..

It might help family be more supportive if I got 'officially' tested.. Mom did ask me if I want potatoes instead of spaghetti today anyway, so hm..

I explained it was a tough decision too..

(Sis and Mom wanted me to get tested, Dad didn't even understand it till a few days ago.. I plain told them pancakes make me sleepy and like not doing anything..)

Apparently even people with fully-diagnosed celiac can have problems with family, friends or others too.. very eye-opening to read.. Though it's quite known here in the last few years.. so I think if I knew I have it I could probably stick to it well..

It's terrible to have such clear head sometimes though.. without the 'buffer' of brainfog (?) so I think without testing I'd still go for occasional intake of possibly iffy food.. hmm..

Apparently there's still 20% chance they don't diagnose you even if you have c. even with the biopsy (which I'm afraid of) And in some rare cases people who have c. can get re-tested (yikes) after a few years and might be okay to eat gluten (?) (Still not sure about that last one).

So, what's the use of getting tested in that case? (You might still have it, or have intolerance.. I'm just very much annoyed by all this, I don't really have time for this, to worry about it and research, would need to focus on other things, grr..)

Laennie Rookie
Laennie
Posted

I don't know a whole lot about it myself. I just heard about Celiac disease last week but I'm waiting to get the results from my blood test that I had on Monday. I know you're supposed to be doing gluten if you plan to have the endoscopy but my doctor told me that I should start trying to do the diet & see how I feel. After reading various posts on here I think I'm just going to keep trying to do the diet & see how I feel no matter what my blood test says. There are too many cases it seems were your tests can come back negative even if you really have it & the diet makes you better. I'm at that point where I've just had too much. If I really do have celiac then it's the likely cause for all my various problems over the years including the possibility of me never being able to walk normal again (just broke my leg real bad in March). I'm tired of being afraid to leave the house etc. Usually my family is all very negative about things, my mom is on board probably just because she found the article about it & thought maybe it was my problem. The rest of the family is not so supportive & I'm kind of afraid that if the test comes back negative my mom's going to back out too. I'm trying to convince her & luckily she's doing research too so my plan is to go gluten free for at least 3 months even if my test comes back negative (most seem to recommend 3 months as a trial) and see how I feel. If I feel better than I just have to stick with it. I've been trying the diet since Tuesday, we've made some minor mistakes but overall the last few days I have felt better. I did mess up right before lunch though, I was gluten free but I ate a yogurt before lunch, after lunch total ugh! First D episode in the last few days (usually all I have is D). So going to try to avoid lots of excess dairy but I am a dairy lover lol.

Good luck in whatever you decide. I get tired of doctors & tests & waiting. This is something I can actually do on my own to look for positive results.

Skylark Collaborator
Skylark
Posted

I am a little confused as to why your normal doctor cannot order bloodwork. It does not require a specialist to order a basic celiac panel. I'd suggest you contact your doctor, tell him/her you want to go gluten-free, and ask for a celiac panel right away so you can start the diet.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748
    Majesticrb
    Newest Member
    Majesticrb
    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

    • ckeyser88
      Roommate search

      By ckeyser88 · Posted

      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
×
×
  • 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.