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

I Need Some Advice

JAS2

By JAS2
in Coping with Celiac Disease

Recommended Posts

JAS2 Rookie
JAS2
Posted

I started eating gluten free 3 weeks ago. I have not been diagnosed with celiac, but have felt so sick (tired, nauseous, anxious, brain fog, depressed and weak) for so long that I decided to cut out gluten for a bit to see if it helped. My sister and I started at the same time and she is feeling great, even though she has cheated a few times and I am feeling worse then ever. I went out for breakfast today for my husband's birthday and before we even ate, I felt like I was going to pass out. Looking at the toast on the table it was the only thing I could think of eating and felt it would have made me feel better. I could barely eat my omelette. I want to cry all of the time and really have no energy and want to sleep. My stomach is also a little weird. I am very discouraged as everyone I have talked to who cut out or even cut down on gluten has said they have felt amazing. I am tempted to start eating gluten again, because maybe this diet just isn't the answer for me. Should I stick it out a little longer or give up?

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Yeah... the thing about gluten is that it is like a drug. It is addicting. It took me about two months to get to get over that.

Stick to it.

mushroom Proficient
mushroom
Posted

As wolfie says, for some of us gluten is highly addictive, acting like an opioid to the body and when we stop eating it we go through withdrawal, as we do with any addictive substance. Think of gluten as your particular heroin (or nicotine, or oxycontin). Your body is craving it right now, begging for it, and you are being strong and saying NO, NO, NO!!! Notice that it was the toast on your plate that you wanted to eat, not the nutritious egg. It was the siren temptress calling to you, I am gluten, eat me!!! :D Think of the agonies of withdrawal others go through and that is what you are going through. I went through withdrawal from a pain medication cold turkey and I had crying jags and the shakes and felt like hell. I went through withdrawal from nicotine and thought my muscles would break every bone in my body, they were so tight and painful. :unsure:

Do not give up, because you are almost over the hump. Hang in there a little while longer and the siren song will stop and you will start feeling better, I promise you. :)

1desperateladysaved Proficient
1desperateladysaved
Posted

Hang in there. I usually feel my absolute worse just before the sun comes through the storm clouds. I say any reaction (good or bad feelings) is a good one. Something is happening. I hate to have to see anyone have to go through the hard part, but it is the way for you it seems.

I had one week of bliss after beginning gluten free, so it is possible to have that too. After that week of bliss I suffered tummy noise, bloating, and aching feet. Not to mention fatigue and dizziness.

Keep checking everything you are eating and getting better at that. Some of my suffering came from mistakes which could have been prevented if I read every label. Did you know to read the label on bottled water? I found one with gluten once! I just left it by the pop machine.

Diana

hoggja Newbie
hoggja
Posted

I started eating gluten free 3 weeks ago. I have not been diagnosed with celiac, but have felt so sick (tired, nauseous, anxious, brain fog, depressed and weak) for so long that I decided to cut out gluten for a bit to see if it helped. My sister and I started at the same time and she is feeling great, even though she has cheated a few times and I am feeling worse then ever. I went out for breakfast today for my husband's birthday and before we even ate, I felt like I was going to pass out. Looking at the toast on the table it was the only thing I could think of eating and felt it would have made me feel better. I could barely eat my omelette. I want to cry all of the time and really have no energy and want to sleep. My stomach is also a little weird. I am very discouraged as everyone I have talked to who cut out or even cut down on gluten has said they have felt amazing. I am tempted to start eating gluten again, because maybe this diet just isn't the answer for me. Should I stick it out a little longer or give up?

I am sorry you feel so tired and ill. You may want to have your iron levels checked, you may be anemic or deficient in vitamins.

It sounds like you really need to see a doctor. Before I was diagnosed, I had similar symptoms but with severe stomach pain.

I had 2 negative blood tests, a negative stomach biopsy and finally a positive biopsy. It is very difficult to diagnose.

Try to stick with the diet, but I would avoid eating out at restaurants. I have found it very difficult to eat out without getting cross contaminated. The omelette you ate was probably prepared on a grill previously used to cook gluten containing foods, or the seasoning added could have been contaminated (I don't know for sure) but I do know that I have gotten sick from a crumb of wheat.

I hope you pursue your health issues with a doctor. Sometimes you really need to push. Best of luck!

nvsmom Community Regular
nvsmom
Posted

Those first couple of weeks were hard on me too. I felt really poorly, tired and cranky, and I had a migraine that lasted over a week. Hang in there and you'll probably feel better soon.

Good luck!

tarnalberry Community Regular
tarnalberry
Posted

I wanted to add - you should check on the omlettes if you're eating at a restaurant. Some places (IHOP is known for this, but it's not super uncommon) put pancake batter in the omlettes.

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

Celiac.com Sponsor (A8-M):


  • 3 months later...
surviormom Rookie
surviormom
Posted

I could use some advice too.  Flat feet?  Anyone hear of flat feet associated with celiac or gluten problems?  Its not me this time, one of my sons

anti-soprano Apprentice
anti-soprano
Posted

For the first couple months, I felt very fatigued.  I stopped exercising because I didn't have the energy. Once I tried to go to yoga and push through the fatigue, ...I ended up injuring myself.  This went on for months.  The closest thing I have felt to it was when I had a partially collapsed lung.  So I deducted that my body was in repair-mode and it was taking literally all of my energy.  Perhaps the same is true for you?  I wasn't sleepy, but I was weary- if that makes sense.  That's when I started searching this forum because I thought you were supposed to feel better right away!  I am just now (after 9 months) getting to a place where my energy is more substantial most of the time.  Some days I think: "This is what people feel like all the time?  The things I could do with this energy!"

 

Definitely see a doctor and make sure nothing else is wrong as others have suggested.  But, I would also suggest not eating that piece of toast!  Eating it could potentially hurt you, assuming your self diagnosis is correct.  Not eating it isn't gonna kill ya.   :D

Best of Luck-

Shellie

gatita Enthusiast
gatita
Posted

I'm going to agree that you should see a doctor and get blood work to make sure nothing else is wrong. Giving up gluten isn't a cure-all for everything and everyone and you don't want to miss something else going on. Also, if you decide you want to be tested for celiac, you will need to go back to eating gluten for the tests to be more accurate.

eers03 Explorer
eers03
Posted

I could use some advice too.  Flat feet?  Anyone hear of flat feet associated with celiac or gluten problems?  Its not me this time, one of my sons

I don't know much about it but it seems like mine have become somewhat flatter.  I was running 3-6 miles about 3-4 times per week.  It seems like my feet did get flatter, I've noticed some fat deposits in my heel below the surface of my skin and my recovery times from running take longer.

Brandiwine Contributor
Brandiwine
Posted

,

@ Diana : You found gluten it water?! That scares the crap out of me!!! What brand was it?!

nvsmom Community Regular
nvsmom
Posted

I could use some advice too.  Flat feet?  Anyone hear of flat feet associated with celiac or gluten problems?  Its not me this time, one of my sons

I don't know about celiac, but flat feet can be seen in hypothyroidism.... and during pregnancy but nevermind that.  ;)  lol

surviormom Rookie
surviormom
Posted

Just curious, this son, has a behavior issue with gluten, and when I researched Flat Feet, I came up with a few causes, but one that stood out to me was diseases of the nervous system, could that be inflammation of the nervous system?  I know it doesn't really matter, it is what it is, he has Flat Feet and needs good shoes and an orthotic, but just to help anyone else with questions, I wanted to pose my question and what I thought.

 

When I had to take away gluten last year, he was one of my children that I saw how it impacted, he went from a borderline ADHD to slightly high spirited and very helpful and thoughtful, so I see some connection.

 

And there is juvenile arthritis.  He has no other signs of arthritis, but he also has no other nervous system issues, take your pick either way I blame the evil Gluten.

kareng Grand Master
kareng
Posted

,

@ Diana : You found gluten it water?! That scares the crap out of me!!! What brand was it?!

I have never seen a plain bottled water with gluten. It's just water. Might be a slight chance a flavored water has it, but I have looked at many brands and never seen gluten in it.

1desperateladysaved Proficient
1desperateladysaved
Posted

,

@ Diana : You found gluten it water?! That scares the crap out of me!!! What brand was it?!

A name brand from the vending machine.  I am sorry I didn't memorize the brand.  I know it wasn't Evian.

Archived

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

Go to topic listing

  • 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. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    2. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    3. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    4. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748
    GR82BNTX
    Newest Member
    GR82BNTX
    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

    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
×
×
  • 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.