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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,703
    • Most Online (within 30 mins)
      7,748
    Sharon Giesler
    Newest Member
    Sharon Giesler
    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

    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
×
×
  • 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.