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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.