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

Been Very Sick For 2 Years-changes With gluten-free Diet

hviola

Recommended Posts

hviola Newbie
hviola
Posted

I have been very very sick for about 2 years. These symptoms popped up gradually over a period of 3 months when I was going through a lot of stress and a bout of pnemonia. (Although, I have always had problems with digesting, joint pain, and anxiety my whole life.) I have seen every doctor and they say I am in perfect health. I even had to quit my job because Im sick! And the Dr's say nothing is wrong!?! Through more and more research on my own, Im starting to think it is food allergies. So I was trying an elimination diet of the different main allergens. I started with gluten. And after 4 days gluten-free, I am showing improvement.

Here were my symptoms and the improvements so far, if any:

(Some I dont list improvements because its too soon to tell)

I am 29 years old and Female

Bad Fatigue (Gone now for 2 days.)

Brain Fog, cant think, confusion (feels a little better)

Extreme light sensitivity (About 20% better. I went to Walmart without feeling like I would pass out from the light)

Sound/Touch sensitivity

Nausea after eating (a bit better)

Anxiety

Depression

Fatty looking stools (not present for 2 days)

Stools only 2-3 times a week

Stomach cramps with frequent diarreah

Dizzyness/Lightheadedness

Had a spontanious miscarriage at 17 weeks!! For NO reason, nothing wrong with baby or me...

Joint pain-neck, lower back, knees, hips (havent felt any since quitting gluten so far)

A lot of times I just feel like I am stoned or had some drinks. Sometimes it even seems like I took some acid or something.

Get extremely sick when trying to diet (When I diet, I eat more cereal and whole wheat)

Severe tonsil infections since I was 8 years old, got them out at 23 years old!

Does any of this sound like symptoms you guys have gone through? Should I ask my doctor for an allergy panel to see if there are any other food allergies?

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

Celiac.com Sponsor (A8-M):


glutenfreegirl Enthusiast
glutenfreegirl
Posted

Hi I have never posted before so I hope I am doing this right!!

Anyway reading your psot I felt like I had writed it myself symptoms and all except for the misscarrage I am sorry for your loss

Iwould definetly get tested however I beleive you have to be eatting gluten for the test to be accurate..

good luck you are definetly in the right place to get help and answers everyone here is so friendly..

quote name='hviola' date='Aug 5 2008, 05:52 PM' post='453779']

I have been very very sick for about 2 years. These symptoms popped up gradually over a period of 3 months when I was going through a lot of stress and a bout of pnemonia. (Although, I have always had problems with digesting, joint pain, and anxiety my whole life.) I have seen every doctor and they say I am in perfect health. I even had to quit my job because Im sick! And the Dr's say nothing is wrong!?! Through more and more research on my own, Im starting to think it is food allergies. So I was trying an elimination diet of the different main allergens. I started with gluten. And after 4 days gluten-free, I am showing improvement.

Here were my symptoms and the improvements so far, if any:

(Some I dont list improvements because its too soon to tell)

I am 29 years old and Female

Bad Fatigue (Gone now for 2 days.)

Brain Fog, cant think, confusion (feels a little better)

Extreme light sensitivity (About 20% better. I went to Walmart without feeling like I would pass out from the light)

Sound/Touch sensitivity

Nausea after eating (a bit better)

Anxiety

Depression

Fatty looking stools (not present for 2 days)

Stools only 2-3 times a week

Stomach cramps with frequent diarreah

Dizzyness/Lightheadedness

Had a spontanious miscarriage at 17 weeks!! For NO reason, nothing wrong with baby or me...

Joint pain-neck, lower back, knees, hips (havent felt any since quitting gluten so far)

A lot of times I just feel like I am stoned or had some drinks. Sometimes it even seems like I took some acid or something.

Get extremely sick when trying to diet (When I diet, I eat more cereal and whole wheat)

Severe tonsil infections since I was 8 years old, got them out at 23 years old!

Does any of this sound like symptoms you guys have gone through? Should I ask my doctor for an allergy panel to see if there are any other food allergies?

samcarter Contributor
samcarter
Posted

Oh yes, I've had the brain fog. For the past 9 years I've felt like I was getting stupider and stupider. Add to that the depression I've had all my life (even as a little child), and suicidal thoughts.

For a while there it was feeling like i'd been drugged--after a meal of pizza or bread, I would just feel like somebody had given me sleeping pills, or I'd had a few drinks. It wasn't so much fatigue as total lethargy. And in the mornings (especially the morning after pizza) I'd feel like I had a hangover. Never wanted to get out of bed. And the bloating, oy.

I've been gluten free for four days, and it is getting better. I feel like my digestive system is still healing, BUT...interestingly enough, where i used to excrete all my vitamins (could tell because my vitamin pills are yellow, and I'd pee bright yellow the next morning), that's not happening. So maybe absorption is getting better. The brain fog and fatigue are most likely from malabsorption of B vitamins (same for depression and anxiety). Make sure you're taking a good B complex vitamin, gluten free of course, and try to take it with your evening meal to give your body time to metabolize it during the night.

KristaleeJane Contributor
KristaleeJane
Posted

Hello and Welcome

Well I just want to say that I have or should I say had a lot of the same symptoms, I am 28, and had tonsilitis, and strep throat so much growing up also and they eventually took my tonsils out at 23 also. I have been trying to get pregant for the last 9 mths with no luck, and so sorry to hear about your miscarriage.

I got diagnosed with celiac only about 3-4mths ago, and I am starting to feel so much better now, I had the blood work done and then a biopsy with both confirmed celiac disease.

If a diagnosis is important to you, you make want to consider that you have to be consuming gluten for the tests to be accurate, you shouldn't start gluten free until your tests are finished.

If diagnosis isn't important to you and you want to start the diet on your own then you don't need to worry about this.

Many of your symptoms sound like celiac disease, my doc tried to tell me I had IBS for a while too.

you should have a celiac panal of blood work done while consuming gluten and if they come back with any sign of celiac then your next step would be to have a biopsy.

Good luck

Krista

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Hi! Allergy testing won't tell you if you have Celiac but it can help in determining if other foods bother you. That is what I am doing on the 11th. KristaleeJane is right about Celiac testing. Make sure you are consuming enough gluten or you could end up a false negative (that's what happened to me).

hviola Newbie
hviola
Posted
  • Author
Hi! Allergy testing won't tell you if you have Celiac but it can help in determining if other foods bother you. That is what I am doing on the 11th. KristaleeJane is right about Celiac testing. Make sure you are consuming enough gluten or you could end up a false negative (that's what happened to me).

I spoke with my doctor today, and he is going to send me to an allergist. He also said he wants to test me (blood tests) for celiac and other food allergies.

Did you get re-tested after your false negative?

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.