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

Newly Gluten Free


bjb

Recommended Posts

bjb Newbie

Hi everyone my name is Brittani I am new to this site. I was diagnosed with Celiac about 5 or 6 years ago I was like 16 at the time. Idecided that I didnt seem to have any symptoms or issues (more like iv had them so long I didnt really realize i had them) so I didnt really need to follow a gluten free diet. Well for the last year I have been having reacurring ear infections so I would go to the walk in clinic and get an antibiotic, finally the Dr. said I needed to go see a specialist so I did. The specialist couldnt find any ear infection or problems with my ears in general. He did however find signs of allergys so we discussed them and I told him I had been diagnosed with Celiac but didnt follow the diet. So he told me I really needed to start following it because its probably the root to all my issues...

 

So I finally gathered togeather all my determination and threw out all foods in my house containing gluten and dairy (my husband is not thrilled but very supportive). I have been gluten and lactose free for a little over 24 hours and to be honest I feel worse! My stomach is gurgeling, I have diarrhea, and a headache. Is this normal for the beginning and how long does it usually take to get felling better?


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Yes, it is normal. Your body is going through a with drawl period from both of those items. It will take a while for it to adjust.

 

Recovery time on the diet varies from person to person. Some feel better within a few weeks, others a few months.

1desperateladysaved Proficient

Hi Brittani,

I hope your ear will stay pain free soon.

Diana

Takala Enthusiast

Avoid processed foods as much as possible, and eat fresh, whole foods cooked from scratch as much as possible.  You also may be intolerant to oats as a small percentage of celiacs are.  Other common cross reactions are dairy (see that you are already avoiding that for now) and soy proteins such as soy flours. 

 

You can't undo years of celiac damage in 24 hours.  It is an auto immune disease and damaged tissues will take time to heal from the assault of the antibodies you've made to your own tissues -  IF you stay really gluten free. 

howlnmad Newbie

Glad that you finally made the decision to take the jump. It's also good that your husband is supportive. It will be hard for both of you but definately worth it. One of the first things that you need to do is get rid of or segregate all of your plastic storage containers. Get yourself glass dishes. Stainless steel cookware is also important. Anything that scratches will become your enemy.

Your husband will make mistakes. Be lenient with him. My first big mistake happened not long after my wife took the plunge (she has celiac, not me). I had been out hunting all day. The day turned out well and I came home excited. She had spent the entire day making a big pot of spaghetti sauce and when I got home it was simmering on the stove. Without thinking, I grabbed a piece of "poison bread" and dipped it in the sauce. I had just ruined that entire pot. Mistakes will happen. Good luck.

Brandiwine Contributor

Glad that you finally made the decision to take the jump. It's also good that your husband is supportive. It will be hard for both of you but definately worth it. One of the first things that you need to do is get rid of or segregate all of your plastic storage containers. Get yourself glass dishes. Stainless steel cookware is also important. Anything that scratches will become your enemy.

Your husband will make mistakes. Be lenient with him. My first big mistake happened not long after my wife took the plunge (she has celiac, not me). I had been out hunting all day. The day turned out well and I came home excited. She had spent

Hi everyone my name is Brittani I am new to this site. I was diagnosed with Celiac about 5 or 6 years ago I was like 16 at the time. Idecided that I didnt seem to have any symptoms or issues (more like iv had them so long I didnt really realize i had them) so I didnt really need to follow a gluten free diet. Well for the last year I have been having reacurring ear infections so I would go to the walk in clinic and get an antibiotic, finally the Dr. said I needed to go see a specialist so I did. The specialist couldnt find any ear infection or problems with my ears in general. He did however find signs of allergys so we discussed them and I told him I had been diagnosed with Celiac but didnt follow the diet. So he told me I really needed to start following it because its probably the root to all my issues...

 

So I finally gathered togeather all my determination and threw out all foods in my house containing gluten and dairy (my husband is not thrilled but very supportive). I have been gluten and lactose free for a little over 24 hours and to be honest I feel worse! My stomach is gurgeling, I have diarrhea, and a headache. Is this normal for the beginning and how long does it usually take to get felling better?

I too am new to the gluten free diet and my best suggestion is to research research research! This website has help a lot, hearing others experiences. From what I understand it takes 6-8 weeks to really start seeing results, I felt some better after the first week but this last week (week number 5) has been hard I've been going through what I think is gluten with drawl or maybe detox but I've had headaches been super tired and emotional. Just hang in there and know it will get better, it gets darkest before dawn!

GottaSki Mentor

Welcome!

Not only do I no longer get recurring ear infections - my hearing in my once nearly deaf problematic ear has improved since about a year or so gluten-free. It tested recently at only 20% loss - at celiac dx it was 75-80% loss of hearing.

I did have one nasty ear infection a few months ago but it resolved without antibiotic - in my 30s I found that my ear infections reaolved in about the same time frame with or without antibiotic. However, I did go to the doctor and got a Rx just in case the ear became worse....thankfully I didn't have to use them.

Make sure you read the "newbie 101" thread and let us know if you have any more ?s :)


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



Celiac.com Sponsor (A8-M):



  • 2 weeks later...
Sunny FL Newbie

My name is Lisa and I'm new to this site.  I was diagnosed with Celiac 1 week ago.  Needless to say, this has been a living hell!  I have been have digestive issues for 20 plus years and now finally have an answer.  We are weeding out all wheat in the house with my 10 years old being the "Drill Sargent"!  I feel like crap, have no energy, can't think straight, running to the bathroom 24 hours a day, and no sleep.  PLEASE tell me this will get better!!!

 

I feel fine when I eat, but when the food moves through my small bowl, the pain is a 8 or 9!!  It is just unreal.  I get the pain under control and then it's off to bed where I get up 10 times an hour to go to the bathroom.  Is it just me?

 

Any help or understanding would be greatly appreciated!!

Brandiwine Contributor

I know exactly where your coming from. The pain is probably from damage, still to simple food for a little bit, fruit, veggies, baked potato.... Stay hydrated drink even if your not thirsty. Drink ginger tea with fresh ginger root, lemon and honey, the ginger helps to heal, and helps with upset tummy issues. Rest as much as possible, be super careful not to get any gluten the longer you go without it the faster you'll get better and it will! Every one is very supportive on here so keep coming back! Hope it passes quickly for you!!

NotMollyRingwald Apprentice

I'm new here too and still figuring this all out, too...so I just wanted to offer up a supportive ((HUG)).  I hope you feel better soon!! And like Brandiwine said, read read read.  This website is so helpful, and the people in the forum are amazing.  Hang in there, it WILL get better!!

GFinDC Veteran

My name is Lisa and I'm new to this site.  I was diagnosed with Celiac 1 week ago.  Needless to say, this has been a living hell!  I have been have digestive issues for 20 plus years and now finally have an answer.  We are weeding out all wheat in the house with my 10 years old being the "Drill Sargent"!  I feel like crap, have no energy, can't think straight, running to the bathroom 24 hours a day, and no sleep.  PLEASE tell me this will get better!!!

 

I feel fine when I eat, but when the food moves through my small bowl, the pain is a 8 or 9!!  It is just unreal.  I get the pain under control and then it's off to bed where I get up 10 times an hour to go to the bathroom.  Is it just me?

 

Any help or understanding would be greatly appreciated!!

 

Hi SunnyFL (Lisa),

 

Do you have a lot of bloating / gas in your gut after eating?  If your gut is inflamed and irritated, blowing it up like a balloon can make it painful.  Bacteria in our guts makes gas and that causes bloating.  If you can reduce that it may help.  Bacteria in our gut feed on the foods we eat.  If we eat a lot of carbs and sugars they have a great old time and make lots of gas.  This is a bigger problem when starting out on the gluten-free diet.  Cutting out sugar and carbs can help.  Also taking probiotics and digestive enzymes can help.  After a while your gut heals and the bacteria tend to stabilize.  But during the healing process it can be tricky.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Archived

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

  • 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. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    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

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.