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

Diagnosed By Celiac disease

aus1708

Recommended Posts

aus1708 Rookie
aus1708
Posted

Today I was diagnosed by celiac disease. I just got my reports and my TTG level is as high as 80. I can only met my GI after 4 days. I am not feeling sick and neither I have any major symptoms or fatigue. I am able to do all my normal daily activity. The only thing which is different is bloating feeling in my stomach. 

I am very tensed after seeing my reports since I am very heavy wheat eater. I just want to know from you guys than is Celiac manageable just by removing gluten from your diet. Can some one tell me if they still get the symptoms or have other issues after going on gluten free diet. Please share your experience. Any sort of guidance is most welcome

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

Celiac.com Sponsor (A8-M):


tessa25 Rising Star
tessa25
Posted

For most people celiac is manageable by just removing gluten from the diet. Keep eating gluten until all testing is done. Your doctor will probably want to do an endoscopy to confirm celiac.

What are your favorite foods with wheat? I can give you some equivalents so that you're not in shell shock. For example, Barilla makes a great gluten-free pasta. It's just pickier about how long it takes to cook. The spaghetti is the easiest to get right. Followed by the fettuccine.

Victoria1234 Experienced
Victoria1234
Posted
57 minutes ago, aus1708 said:

Today I was diagnosed by celiac disease. I just got my reports and my TTG level is as high as 80. I can only met my GI after 4 days. I am not feeling sick and neither I have any major symptoms or fatigue. I am able to do all my normal daily activity. The only thing which is different is bloating feeling in my stomach. 

I am very tensed after seeing my reports since I am very heavy wheat eater. I just want to know from you guys than is Celiac manageable just by removing gluten from your diet. Can some one tell me if they still get the symptoms or have other issues after going on gluten free diet. Please share your experience. Any sort of guidance is most welcome

Don't be worried! Cutting out gluten completely is all you need to do. Many people see their doctors regularly to monitor vitamin and iron levels, and repeat some of the celiac testing to show how well they are doing.

I personally had many symptoms, and it took about 2 months for them to all go away. For some it takes longer as the learning curve is steep for the diet. Gluten is hidden in many foods, and learning what it's called can take a while. So is eating out... you will have to learn what to ask when you eat out, and they make mistakes with cross contamination in restaurants a lot. You'll have to learn who to trust.

but most people will recommend to eating Whole Foods and not eating out for the first 6 months to heal your body faster. Just because you only have bloating doesn't mean there isn't damage inside your body. 

Oh yes, milk is something you might be intolerant to for 6 to 12 months. Your inside damage can make it so you can't digest and absorb it properly, at least the protein in milk, and it definitely can cause bloating amongst other things.

Wecome to the board! There is a newbie section that can explain all this and much more. This site is like a godsend to celiac sufferers.

Ps keep eating gluten! Your gi is probably going to order a test to check your upper insides, so you need to keep eating it in order to have the damage to show. You don't want to heal first then do the test. Sounds stupid I know!

aus1708 Rookie
aus1708
Posted
  • Author
15 hours ago, Victoria1234 said:

Don't be worried! Cutting out gluten completely is all you need to do. Many people see their doctors regularly to monitor vitamin and iron levels, and repeat some of the celiac testing to show how well they are doing.

I personally had many symptoms, and it took about 2 months for them to all go away. For some it takes longer as the learning curve is steep for the diet. Gluten is hidden in many foods, and learning what it's called can take a while. So is eating out... you will have to learn what to ask when you eat out, and they make mistakes with cross contamination in restaurants a lot. You'll have to learn who to trust.

but most people will recommend to eating Whole Foods and not eating out for the first 6 months to heal your body faster. Just because you only have bloating doesn't mean there isn't damage inside your body. 

Oh yes, milk is something you might be intolerant to for 6 to 12 months. Your inside damage can make it so you can't digest and absorb it properly, at least the protein in milk, and it definitely can cause bloating amongst other things.

Wecome to the board! There is a newbie section that can explain all this and much more. This site is like a godsend to celiac sufferers.

Ps keep eating gluten! Your gi is probably going to order a test to check your upper insides, so you need to keep eating it in order to have the damage to show. You don't want to heal first then do the test. Sounds stupid I know!

 

aus1708 Rookie
aus1708
Posted
  • Author
On 6/24/2017 at 8:29 PM, Victoria1234 said:

Don't be worried! Cutting out gluten completely is all you need to do. Many people see their doctors regularly to monitor vitamin and iron levels, and repeat some of the celiac testing to show how well they are doing.

I personally had many symptoms, and it took about 2 months for them to all go away. For some it takes longer as the learning curve is steep for the diet. Gluten is hidden in many foods, and learning what it's called can take a while. So is eating out... you will have to learn what to ask when you eat out, and they make mistakes with cross contamination in restaurants a lot. You'll have to learn who to trust.

but most people will recommend to eating Whole Foods and not eating out for the first 6 months to heal your body faster. Just because you only have bloating doesn't mean there isn't damage inside your body. 

Oh yes, milk is something you might be intolerant to for 6 to 12 months. Your inside damage can make it so you can't digest and absorb it properly, at least the protein in milk, and it definitely can cause bloating amongst other things.

Wecome to the board! There is a newbie section that can explain all this and much more. This site is like a godsend to celiac sufferers.

Ps keep eating gluten! Your gi is probably going to order a test to check your upper insides, so you need to keep eating it in order to have the damage to show. You don't want to heal first then do the test. Sounds stupid I know!

Thanks Victoria123r for your suggestion. I have performed the blood test confirming of Celiac and even the Biopsy report suggested Villous Atropy due to gluten. From pat 2 days I have left eating the food with gluten and the burping issue is now fine. Also I had a problem of liquid stools from past week for which I showed to gastro is also over. It was not like diarrhea but once a day.  I am going to met my GI on wednesday and wi;; sede what he suggest.

 

It seems there is lots of thing which i need to learn about celiac and need to change my lifestyle and eating habits. Here in India not many people are aware of this disease(It was new for me as always) and I am having bit difficulty to explain to people. Also there are no scope for gluten free food in Grocery stores so I have to take care of my own foods. Is there anyone who lives in India, Mumbai or Bangalore. If yes, please suggest me few gluten free food shop.

kareng Grand Master
kareng
Posted
14 minutes ago, aus1708 said:

Thanks Victoria123r for your suggestion. I have performed the blood test confirming of Celiac and even the Biopsy report suggested Villous Atropy due to gluten. From pat 2 days I have left eating the food with gluten and the burping issue is now fine. Also I had a problem of liquid stools from past week for which I showed to gastro is also over. It was not like diarrhea but once a day.  I am going to met my GI on wednesday and wi;; sede what he suggest.

 

It seems there is lots of thing which i need to learn about celiac and need to change my lifestyle and eating habits. Here in India not many people are aware of this disease(It was new for me as always) and I am having bit difficulty to explain to people. Also there are no scope for gluten free food in Grocery stores so I have to take care of my own foods. Is there anyone who lives in India, Mumbai or Bangalore. If yes, please suggest me few gluten free food shop.

There is a lot of Celiac research done by Researchers from India.  The latest national Celiac symposium was in India.  Maybe if you look at the site , you can find which hospitals have Celiac programs.  Check their websites or call for info?

Open Original Shared Link

Victoria1234 Experienced
Victoria1234
Posted
40 minutes ago, aus1708 said:

Thanks Victoria123r for your suggestion. I have performed the blood test confirming of Celiac and even the Biopsy report suggested Villous Atropy due to gluten. From pat 2 days I have left eating the food with gluten and the burping issue is now fine. Also I had a problem of liquid stools from past week for which I showed to gastro is also over. It was not like diarrhea but once a day.  I am going to met my GI on wednesday and wi;; sede what he suggest.

 

It seems there is lots of thing which i need to learn about celiac and need to change my lifestyle and eating habits. Here in India not many people are aware of this disease(It was new for me as always) and I am having bit difficulty to explain to people. Also there are no scope for gluten free food in Grocery stores so I have to take care of my own foods. Is there anyone who lives in India, Mumbai or Bangalore. If yes, please suggest me few gluten free food shop.

You are lucky so many of your favorite foods are going to be gluten free already. Except of course for your delicious breads. 

You will have to watch eating out. Meaning, with many breads cooked in the tandoori oven, you can't have anything also cooked in the same oven. It will be cross contaminated. So it will be best for you to cook most, if not all, your foods at home.

feel free to post any of your favorite recipes for us here. Indian food is my personal favorite type of food in the world!

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

Celiac.com Sponsor (A8-M):


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. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
    2. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
    3. Scatterbrain
      - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Thanks to those who have replied. To Cristina, my symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia. Generally feeling unwell. To Trents, We didn’t do any of the construction but did v...
    4. Kirita
      - Kirita replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant b...
    5. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,287
    • Most Online (within 30 mins)
      7,748
    Desert Ratt
    Newest Member
    Desert Ratt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
    • Scatterbrain
      Feel like I’m starting over

      By Scatterbrain · Posted

      Thanks to those who have replied.  To Cristina, my symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell. To Trents, We didn’t do any of the construction but did visit the job site quite often.  While getting the old house ready we stirred up a lot of dust and I’m sure mold but haven’t been back there for over a month.
    • Kirita
      Recovery from gluten challenge

      By Kirita · Posted

      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
×
×
  • 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.