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


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14 replies to this topic

#1 mommyof4

 
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Posted 17 April 2012 - 06:58 AM

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...
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#2 GFreeMO

 
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Posted 17 April 2012 - 07:26 AM

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.
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#3 Skylark

 
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Posted 17 April 2012 - 08:20 AM

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.
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#4 BabsV

 
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Posted 17 April 2012 - 11:58 AM

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.
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#5 GFreeMO

 
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Posted 17 April 2012 - 12:54 PM

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, ‘whooshing,’ buzzing etc.
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#6 inspired421

 
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Posted 17 April 2012 - 01:41 PM

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...
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#7 mommyof4

 
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Posted 17 April 2012 - 01:53 PM

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?
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#8 GFreeMO

 
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Posted 19 April 2012 - 08:38 AM

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.
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#9 ravenwoodglass

 
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Posted 19 April 2012 - 01:54 PM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#10 mommyof4

 
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Posted 20 April 2012 - 06:31 AM

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!
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#11 frieze

 
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Posted 20 April 2012 - 02:02 PM

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.
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#12 ravenwoodglass

 
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Posted 20 April 2012 - 02:57 PM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#13 cait

 
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Posted 22 April 2012 - 11:47 AM

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.
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Dad has Celiac
Neg Celiac tests, positive gene test
Life vastly improved off gluten
Dunno what that makes me, but I'm not going back.
Now corn, soy, and dairy free

#14 JoeBlow

 
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Posted 23 April 2012 - 06:33 AM

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.
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JoeBlow

Gluten-free,Dairy-free 08/06/07, Sugar-free since 1980
Diagnosed Celiac 09/29/07, HLA-DQB1s 0201, 0602

#15 sce2012

 
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Posted 26 April 2012 - 01:35 PM

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!
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