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

How Frustrating...

lorka150

Recommended Posts

lorka150 Collaborator
lorka150
Posted

To make a long story short:

I felt very sick for a long time. Had lots of the symptoms. Investigated celiac. Figured it might be an answer. Had the bloodtests. Prior to bloodtesting I maybe ate one wheaty grain a day (was never a huge grain eater). Made an effort to have a big bowl of cereal that morning.

Only got back EMA (or whatever that one is... The one that is either positive or negative). It was negative. The others have yet to come back - it's been about 6 weeks.

I went gluten free about two days after the bloodtest. Sick of feeling sick. Since then, I have felt better. Some things went away: bloating, extreme fatigue, this and that. Some things still occur (lots of pooping, fatigue occasionally after eating).

After a few weeks, saw another two doctors, both of which said if I am feeling better then it sure looks like I am celiac (I had/have so many of the symptoms).

There has been episodes where I think I've gotten glutened.

I've been really careful - switched all my products and such.

Anyway...

I'm frustrated. Even when I am really careful, once in awhile I feel like I was 'slightly' glutened. Like when I eat something, I get dizzy and tired - but not extremely dizzy and tired like when I am more positive that I ingested gluten.

So it's been about 6 weeks. Overall, I feel better, but some days I still get this and that. It makes me doubt this whole thing. I don't know what I should do. I am afraid to do a self-test, and think that it might be too soon.

Either way, any ideas? Thoughts?

Going on a high gluten diet is sort of out of the question because a lot of the foods bother me so much, that I can't physically do it - I have never ate more than one grain serving a day, maximum. So I don't know.

Also, are there different levels of glutening? I mean, say my shampoo had it (even though I know it's gluten-free), would that cause less of a glutening than, say, eating a product that was cross contaminated?

Also, when you get 'glutened', could you feel REALLY bad for about two days, it let up maybe for one, and then maybe return with a trigger to your digestive system? IE, a few days ago, I had a brutal reaction, felt like garbage for two days, and today I felt great til after dinner (and I know it was gluten-free), and I got dizzy and fatigued for about an hour... Then felt fine again.

Oh my.

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted
Prior to bloodtesting I maybe ate one wheaty grain a day (was never a huge grain eater).
That may have not been enough wheat to result in a positive blood test; therefore, the test result may have been a false negative. If you feel a lot better on the diet, then I think that your doctors are right, you could have celiac. If you don't, then you would most likely have an intolerance or a sensitivity to wheat/gluten based on the positive dietary response.

So it's been about 6 weeks. Overall, I feel better, but some days I still get this and that. It makes me doubt this whole thing. I don't know what I should do. I am afraid to do a self-test, and think that it might be too soon.
Be patient :) I know it's hard because I have been there myself wondering why I'm not getting better. It may have month or even up to a year to feel 100% better on the diet. If your intestines are damaged they need lots of time to heal, depending on the extent of the damge.

Also, are there different levels of glutening? I mean, say my shampoo had it (even though I know it's gluten-free), would that cause less of a glutening than, say, eating a product that was cross contaminated?
Guten in cosmetics and gluten cross contamination can cause bad reactions and possible intestinal damage. Basically anything that goes near your mouth has to be free of gluten in order to prevent a reaction.

Also, when you get 'glutened', could you feel REALLY bad for about two days, it let up maybe for one, and then maybe return with a trigger to your digestive system?
For me it seems to depend on the amount of gluten I have. My reactions can last for 2-3 days or for over 2 weeks!
lorka150 Collaborator
lorka150
Posted
  • Author

Thanks for your reply. I feel a lot better now having read that. It's quite hard at the beginning. I have to keep remembering all the symptoms that have disappeared, other than the ones that are still there.

Rachel--24 Collaborator
Rachel--24
Posted
It's quite hard at the beginning. I have to keep remembering all the symptoms that have disappeared, other than the ones that are still there.

<{POST_SNAPBACK}>

So true. I find I have to remind myself of that as well. Even though 90% of my symptoms are gone after less than a month sometimes I find myself dwelling over that other 5%. I can totally function now and I have my brain back but yet I'm like "Why is my face still puffy?" It makes me feel ungrateful for all the good things...shame on me. :ph34r:

cheryl50 Newbie
cheryl50
Posted

Even though 90% of my symptoms are gone after less than a month sometimes I find myself dwelling over that other 5%.

Rachel - What about the other 5% ?

Rachel--24 Collaborator
Rachel--24
Posted
Rachel - What about the other 5% ?

<{POST_SNAPBACK}>

:lol::lol: It took me a minute to figure that out!

Maybe the other missing 5% is brainfog...which I *thought* was gone but apparently isn't. :blink:

Thanks for pointing that out Mom. :ph34r:

Guest nini
Guest nini
Posted

I know it's frustrating...

I'm over 2 years into this gluten-free thing, and while I'm feeling tons better than before dx... I'm still not 100%... and I've found that even walking near the bakery in the grocery store or the flour aisle will make me nauseas and give me instant brain fog. I even get upper respiratory symptoms when that happens (coughing, congestion)...

I will never ever willingly consume gluten again, I do feel so much better than I did before AND I've lost over 80 pounds in the past 2 years!

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

Celiac.com Sponsor (A8-M):


connole1056 Rookie
connole1056
Posted

You could be allergic to wheat, and not have celiac disease. Did you get a regular wheat allergy test? If you feel better on a gluten-free diet, and do not mind being on it, then it might be best to stay on the diet without a clear diagnosis. Many people eat gluten-free without it. It certainly won't hurt you to be gluten-free. The only problem I can think of now is your symptoms might be from something else that you need to have diagnosed. I would hate to have you suffering from an undiagnosed illness or disease.

It is not unusual to take a year to feel better. And who is really 100% healthy 100% of the time anyway? Everyone gets sick sometimes, right? Personally, I cannot remember the last time I really felt 100% healthy. It has to be 6 years at least, thanks to lupus. I figure 65% as areally really good day. I truly do not know what 100% is anymore. Probably wouldn't even know it if I saw it!! But as for you, perhaps you simply need to be gluten-free longer to feel really great. I do not know how old you are, but I do know that many times the longer a person is NOT diagnosed, the longer it can take the body to heal. And since you did not eat that many grains daily beforehand and still felt sick, then you could be extremely sensitive to gluten. Do you know if the rest of your diet was gluten-free-like, were you getting any hidden gluten in your diet? I ask because your intestine may have been damaged to a higher degree than you think if you were ingesting hidden gluten. Therefore, you could need alot of time to heal your intestine.

One frustrating thing is that reactions to gluten are not necessarily immediate. Sometimes they can take up to two days so it can be very difficult to determine the source of contamination. Maybe you are getting some cross-contamination here and there and are not able to pinpoint it. Does anyone else prepare your meals? Just thinking you might be getting a bit of gluten when someone else cooks for you, even when the food is gluten-free the cook might be using contaminated utensils, etc. I really hope you feel better soon.

lorka150 Collaborator
lorka150
Posted
  • Author

Thanks for your thoughts. I am 22 years old. I am almost positive everything is 100% gluten free, but I guess there is always that chance. I know I am not allergic to wheat (due to a scratch test).

I have been gluten free only for about 4 weeks, and casein free for about 2. I think I am just being impatient. :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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
      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.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.