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. Roses8721
      - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    2. Roses8721
      - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      GI DX celiac despite neg serology and no biopsy

      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    3. Scott Adams
      - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy

      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover...
    5. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748
    kygirlsusan
    Newest Member
    kygirlsusan
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Roses8721
      gluten-free Oatmeal

      By Roses8721 · Posted

      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
×
×
  • 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.