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

Confused Why I Have A Good Day & Then A Rough Day


mommyof4

Recommended Posts

mommyof4 Apprentice

HI,

I guess I just need some advice or perhaps encouragement from "seasoned" Celiacs. I was diagnosed with celiac disease 6 months ago...long story, but I was very sick, in the hospital, lost 22 lbs., weak & shaky for months. Anyways, when I look back over the past 6 months I can tell I am recovering...for that I am thankful. However, I still don't understand why one day can be really good physically & the next can be tough. For example, yesterday I felt great...almost "normal" for the first time since I got sick. Today I am "off"...I feel foggy, anxious, tired & a little discouraged. I bake everything I eat or eat raw fruits & veggies. I don't think I got glutened yesterday...maybe I did & don't know it.

I am a 40 year old wife & mom of 4...I just want to feel consistantly "normal". It's difficult to plan things when I am not sure how I will be feeling or if I will have to change those plans. Mentally I am trying to keep a really positive attitude, but some days I just wear down with this change of life.

How long did it take some of you to feel consistantly "normal" or the "new normal"? Last time I had my vitamin levels checked, everything was good. I take a g.f. multi-vitamin & probiotics.

Thanks for your input...


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



Celiac.com Sponsor (A8-M):



GFreeMO Proficient

I am around your age. I am having the same issues and I think it is perimenopause. It can cause all kinds of problems including those that you mentioned along with digestive issues.

Skylark Collaborator

I'd suggest you start a food/symptom diary. A lot of us have other intolerances besides gluten. The diary makes it easy to look for patterns. Pay particular attention to dairy, corn, and soy.

BabsV Enthusiast

I'm 8 months gluten-free and experiencing the same thing. I have started trying to sort out other foods that might be a problem...I've gone grain free and that seems to be helping some. I was eating a lot of quinoa but my system is in better shape without it apparently.

GFreeMO Proficient

Here are the symptoms of perimenopause. LIke the above posters said, it could be a reaction to another food. Corn kills me. It makes me feel as bad as gluten. But with that said, not everything is celiac related. My Dr. said that peri can last 10 years and can cause these symptoms.

35 Symptoms of Perimenopause

Hot flashes, flushes, night sweats and/or cold flashes, clammy feeling

Irregular heart beat

Irritability

Mood swings, sudden tears

Trouble sleeping through the night (with or without night sweats)

Irregular periods; shorter, lighter periods; heavier periods, flooding; phantom periods, shorter cycles, longer cycles

Loss of libido

Dry vagina

Crashing fatigue

Anxiety, feeling ill at ease

Feelings of dread, apprehension, doom

Difficulty concentrating, disorientation, mental confusion

Disturbing memory lapses

Incontinence, especially upon sneezing, laughing; urge incontinence

Itchy, crawly skin

Aching, sore joints, muscles and tendons

Increased tension in muscles

Breast tenderness

Headache change: increase or decrease

Gastrointestinal distress, indigestion, flatulence, gas pain, nausea

Sudden bouts of bloat

Depression

Exacerbation of existing conditions

Increase in allergies

Weight gain

Hair loss or thinning, head, pubic, or whole body; increase in facial hair

Dizziness, vertigo, light-headedness, episodes of loss of balance

Changes in body odor

Electric shock sensation under the skin and in the head

Tingling in the extremities

Gum problems, increased bleeding

Burning tongue, burning roof of mouth, bad taste in mouth, change in breath odor

Osteoporosis (after several years)

Changes in fingernails: softer, crack or break easier

Tinnitus: ringing in ears, bells,

inspired421 Newbie

I agree --it's the pits to make plans, then hope I have the energy to do what I committed to.

I agree with the suggestion to keep a log of food eaten and symptoms.

When I first gave up gluten, I felt slightly better. I discovered I am sensitive to many more foods. Since eliminating them , my symptoms aren't as bad. I'm not nearly "normal" yet...I've even forgotten what that feels like.

Other foods I ended up eliminating (or cutting way back): soy, corn, grains (I thought steel cur oats were so good for me!), nuts, legumes, some tomatoes (I do muscle test to determine which), vinegar. . .

Good luck to you. Keep posting...

mommyof4 Apprentice

Thank you for your replies. I was journaling food for a while...I have let that slack, but I will definately start again to see if there are any other food intolerances. I also appreciate the info about perimenopause...I really hadn't thought about that. Both my mom & sister had hysterectomy's, so I don't have any idea our family history with menopause...is there a way to check perimenopause at the dr?


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



Celiac.com Sponsor (A8-M):



GFreeMO Proficient

Thank you for your replies. I was journaling food for a while...I have let that slack, but I will definately start again to see if there are any other food intolerances. I also appreciate the info about perimenopause...I really hadn't thought about that. Both my mom & sister had hysterectomy's, so I don't have any idea our family history with menopause...is there a way to check perimenopause at the dr?

They can check your hormone levels to see whats going on.

ravenwoodglass Mentor

Thank you for your replies. I was journaling food for a while...I have let that slack, but I will definately start again to see if there are any other food intolerances.

In addition to keeping a journal of what you are eating and how you are feeling you should also keep a log of what you are cooking that is not gluten free. You mentioned in another post that you make baked goods that are not gluten free for the gluten eaters at your home. There can be a problem with baking with gluten flours for others as the flours can become airborne and we breathe them in and that can activate the antibodies. Keep the journal and see if there is a pattern with either what you are eating of baking for others. Reactions can be delayed so the journal can be really helpful.

mommyof4 Apprentice

Please don't think I am completely ridicuous, but is it possible to get glutened baking non-g.f. items? I didn't really think of that. Like I mentioned, I am pretty new to all of this. I just assumed that if I didn't eat the item & if I kept baking items seperated, I would be ok. Very interesting. I will journal all of that too. I try to bake mostly gluten-free...I'm just caught in the place of wanting to make a few items for the non-Celiacs in our home too.

Guess I need to learn how to bake homeade g.f caramel rolls...just can't seem to get g.f bread dough to rise!

Thanks for your post...I appreciate input from someone who is seasoned!

frieze Community Regular

Please don't think I am completely ridicuous, but is it possible to get glutened baking non-g.f. items? I didn't really think of that. Like I mentioned, I am pretty new to all of this. I just assumed that if I didn't eat the item & if I kept baking items seperated, I would be ok. Very interesting. I will journal all of that too. I try to bake mostly gluten-free...I'm just caught in the place of wanting to make a few items for the non-Celiacs in our home too.

Guess I need to learn how to bake homeade g.f caramel rolls...just can't seem to get g.f bread dough to rise!

Thanks for your post...I appreciate input from someone who is seasoned!

Yes, when you measure and sift flour, some of it gets airborn. If you breath it in, and it isn't sneezed back out, you will swallow it. Just think of getting water up your nose, it ends up in your throat.

ravenwoodglass Mentor

Guess I need to learn how to bake homeade g.f caramel rolls...just can't seem to get g.f bread dough to rise!

Head to the baking and recipe section of the board. Someone may already have a recipe for the caramel rolls. You can also get some help with the bread. Baking gluten free bread is a bit different than wheat breads. They usually only do one rise and aren't kneaded. More like a batter than a dough, at least the ones I used to make. I just buy prepared now that I am the only one home eating bread.

cait Apprentice

You can absolutely get glutened baking things for them, even if you don't eat it. Also, how old are your children? We had to make our entire house gluten free because our kids were too little to really be careful with their crumbs yet and I kept getting hit by that. They eat gluten out of the house, but in the house we're pretty strictly gluten free.

JoeBlow Rookie

You can absolutely get glutened baking things for them, even if you don't eat it. Also, how old are your children? We had to make our entire house gluten free because our kids were too little to really be careful with their crumbs yet and I kept getting hit by that. They eat gluten out of the house, but in the house we're pretty strictly gluten free.

These are all good suggestions. It is not just the flour in the air that could be the culprit. I found, and learned from another ultra-sensitive celiac, that I get glutened if I am smelling wheat baked goods strongly and breathe it. What is even worse is being in the house when someone is boiling wheat pasta. The steam does put particles in the air. I had a housemate and had to move to a house by myself.

I still was having more bad days than good after a few years of being strictly gluten-free. My doctor had me try Armour thyroid, since I had most of the hypothyroid symptoms, despite normal lab results. That makes a huge difference.

sce2012 Newbie

Is there somewhere that shows that cooking pasta releases gluten molecules? Just for my own information/sanity? My husband does not cook gluten free and I am stressing about this possibility. Thanks!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,553
    • Most Online (within 30 mins)
      7,748

    Jennifer CCC
    Newest Member
    Jennifer CCC
    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.