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

Feeling So Horrible


Ys255

Recommended Posts

Ys255 Rookie

I know, it's only been 3 days without gluten but I find myself hard to keep up.

Stomach troubles have no issue which is nice for once, but physically and mentally I'm struggling with. My eczema has flared up big time, more redness, itchy, irritating, dryness. I've had a headache for 2 days, not like a migraine though, but it's there... I'm extremely tired to a point I can't do simple things like chores, and my anxiety, depression and OCD has really made a bigger impact.

The best way to describe is I'm plain miserable, and finding it very hard to keep going. I've been eating very healthy - yet I feel like I'm on one long hangover with more negative thoughts running through my head.

Whats going on? Am I doing something wrong?


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Maybe gluten isn't your problem? I remember you posting your test results and they were negative? I would hate for you to miss a problem while you are assuming it is an intolerance to gluten.

nvsmom Community Regular

That sounds like it could be withdrawal; about a third of celiacs go through it.  :( When I went through it I as so exhausted no matter how much I slept, I was incredibly cranky and irritable, and I had a migraine that lasted for days. Overall, I was out of withdrawal after about two and a half weeks.

 

Give it time to pass, but as karen suggested, keep an eye out for other causes too - it could be a coincidence.

 

Best wishes. I hope you feel well soon.

Ys255 Rookie

Yeah, they were negative, but mentioned my thyroid level was something to look at. My doctor said it was at normal levels, so I'm not sure whether to go for a thyroid test or not. I guess I'll keep going with the gluten free diet for a couple of weeks and see if the symptoms fade out?

nvsmom Community Regular

My thyroid symptoms felt a LOT like celiac disease symptoms, and low energy was top of the list. I would get it checked. Don't accept "normal" unless they ran all thyroid tests like TSH (should be near a 1 regardless of the range), free T3 and free T4 (ideally in the 50-75% ranges of your lab's normal reference range), and TPO Ab.

The problem with thyroid testing is that the normal range is set up to include 95% of the population but almost 10% of the population has thyroid problems... And half of them will fall in the normal range.

Good luck.

Ys255 Rookie

Oh right, I guess it can't hurt to get it checked out. Do you need to be on gluten or anything for testing?

1desperateladysaved Proficient

I had troubles a few months after I went gluten free.  I got worse before I got better.  I believe I did experience withdrawal and or problems with cross contamination during that time.  I would recommend continuing the diet for at least 6 months while still considering other options.  Make sure to refine your gluten free diet, other gluten product use, and work on possible cross contamination issues to get a fair trial.  Keep on!

 

D


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



Celiac.com Sponsor (A8-M):



tryme Rookie

Hi ys255,

I went through similar withdrawal. My GI symptoms disappeared in couple days but my energy and mood went really down and my anxiety up. It took about good 2 weeks for them to start stabilizing. I also started noticing my eczema on my hand return (I didn't have it for 3 years). All of that is setteling down now. I am roughly a month into my diet as well. Please hang in there . Starting is always the hardest part. The people here are very suportive and have wealth of knowledge. They can really empathise with you as they have been through similar struggles.

Also as everyone said, it will be a good idea to get your thyroid checked. I have hyperparathyroidism and it can cause similar GI symptoms and neurologic symptoms as celiac.

nvsmom Community Regular

Do you need to be on gluten or anything for testing?

 

No, just celiac tests require a gluten challeng of two months. Thyroid testing can be done at any time and is a separate issue.

 

Good luck!

Tbolt47 Newbie

Ys,

 

For me 11 months gluten free the GI symptoms cleared up first, followed by the neurological, clumsiness, unsteady   like you were walking  on a boat etc. Lastly the Brain fog, depression and anxiety. I experienced the fatigue throughout the process.

Archived

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


  • 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
      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
      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
      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
      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
      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.