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. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.