Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Confused Why I Have A Good Day & Then A Rough Day
0

15 posts in this topic

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...

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

4

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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,

0

Share this post


Link to post
Share on other sites




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...

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,365
    • Total Posts
      920,552
  • Topics

  • Posts

    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
    • Hi! I am 15 and have been diagnosed with celiac disease for about a year and a half now and I am woundering what do some of y'all use to relive some of the abdominal pains that come along with celiac/gluten allergies?  ( Ibuprofen,  Tylenol, etc.) 
    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,439
    • Most Online
      1,763

    Newest Member
    DKH0614
    Joined