Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Please help.


TheWeatherMan

Recommended Posts

TheWeatherMan Rookie

Hello 

my name is Lewis from the UK.

For the last 6 months Ive been having lots of gastro issues including bloating, flatulence, D and discomfort in my stomach.

It seem to start after I had some antibiotics for a dental infection and a course of strong pain killers.

i noticed all of a sudden that certain foods was giving me instant symptoms, especially gravy with a Sunday roast or dairy. 

Gradually I started feeling weak and tired and was losing weight, I even didn’t want to eat because I was worried about the symptoms. 

When I did eat I kept eating bread, cereal, my normal diet basically but things didn’t improve.

i felt weaker, lethargic and even forgetful at times. I went to doctors and my doctor said it is IBS and acid reflux (even though I didn’t have heartburn or acid reflux).

He decided to do a full CBC (complete blood count). Everything came back absolutely perfect, he even checked for Celiac and Chrones which both came back negative. 

I was surprised all my iron levels etc etc came back fine because I was feeling so low and tired all the time.

Anyhow I kept going back and he put me on Lansoprazole for 2 months blaming acid for my issues. For the first week or two my stomach did felt more settled but I still had lots if not more food sensitivities. 

It got to a point that I was having some undigested food when I went to the bathroom so I came off them.

when eating bread I get bloated or it seems gluten products (not sure if it’s just bread). But after a day or two I get flu like symptoms and I also start itching on my legs and the back of my hands near the top of my thumb and I got these little dot like spots that are hard to see.

ive introduced digestive enzymes with HCL into my diet and I seem to be able to tolerate bread/gluten and many other foods now but it doesn’t stop the feeling fatigued and I sometimes get a burning sensation in my stomach and middle section of my stomach when eating bread/food with gluten. 

I occasionally get lower back ache when all the symptoms hit me at once. My hair doesn’t look as healthy nor does my skin/nails and I feel as though I’m not getting the nutrition I need. My weight has levelled out now (last few months) and at times when I’m eating well I put weight on but when I have these symptoms really bad I lose it because I stop eating. 

My question is can it be gluten causing the issue even though my blood test for coeliac came back ok?

Thank you

lewis 

 

 

 

 


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



Celiac.com Sponsor (A8-M):



TheWeatherMan Rookie

Quick update. 

I had a sandwich and a chicken tikka pastie yesterday for lunch and within 2 hours of eating I was knocked for six. No D this time but just weak feeling and this burning sensation from my stomach through my small intestine at one point it was like someone was cutting me from the inside. I was bloated for a good 2 hours also, I looked 9 months pregnant! And that was with digestive enzymes + HCL!! 

today my children wanted some fast food as a treat because it is Friday/weekend I said ok. I decided to have some donner meat (doesn’t ever give me issues). We got a free cheese and tomato pizza with it and I just couldn’t help myself! I ate 2 slices and once again bloated, feeling sickly, burning sensation and pain. 

Rrally starting to believe I have some intolerance to wheat/gluten.

blood test on CBC test came back negative for celiac. 

GFinDC Veteran
(edited)

Hi,

Do you know what tests they did for celiac disease?  The tests are usually called something like

DGP-IgA

DGP-IgG

EMA

ttg-IgA

total serum IgA

It might be helpful if you could post the tests and their ranges,  Different labs have different ranges for normal, positive, etc.

Your symptoms could certainly fit celiac disease.

Edited by GFinDC
TheWeatherMan Rookie

Went back to the doctors today. Asked for my results, doctor said you don’t need to worry, test came back and said you don’t have celiac (blood test result of a full blood count).

She said you don’t need to worry, you are not a celiac, you’re to big for that. Im 17 stone and just over 6 foot 2... I was shocked when she said that to me.....

 

 

Quick update. 

I had a sandwich and a chicken tikka pastie yesterday for lunch and within 2 hours of eating I was knocked for six. No D this time but just weak feeling and this burning sensation from my stomach through my small intestine at one point it was like someone was cutting me from the inside. I was bloated for a good 2 hours also, I looked 9 months pregnant! And that was with digestive enzymes + HCL!! 

today my children wanted some fast food as a treat because it is Friday/weekend I said ok. I decided to have some donner meat (doesn’t ever give me issues). We got a free cheese and tomato pizza with it and I just couldn’t help myself! I ate 2 slices and once again bloated, feeling sickly, burning sensation and pain. 

Rrally starting to believe I have some intolerance to wheat/gluten.

blood test on CBC test came back negative for celiac. 

TheWeatherMan Rookie

I also had bread today. I decided to have some home made healthier chips with brown bread/one with seeds in and for my desert I had a gluten, wheat free, dairy free caramel shortcake as I’ve not been really up to eating large meals lately.

no burning sensation, no digestive pain or issues....?? 

 

Ennis-TX Grand Master

It is your right to have a copy of you test, I would demand it. Some test negative on the blood test. If you keep on having issues see about getting a scope to see if there is any other issues.....if you doctor has a issue with this here is a idea...go in...eat a sandwich and have him witness the distention...ask if that is normal.
Other thoughts Non Celiac Gluten Sensitivity is also possible, no way to really test other then treating with a gluten free diet and a food diary.

You mentioned after a round of antibiotics....does plan rice, potatoes bloat you? Might be something like Candida which would have flourished out of control with antibiotics, it would flare to simple carbs, and things that kill it off.

 

kareng Grand Master
48 minutes ago, Ennis_TX said:

It is your right to have a copy of you test, I would demand it. Some test negative on the blood test. If you keep on having issues see about getting a scope to see if there is any other issues.....if you doctor has a issue with this here is a idea...go in...eat a sandwich and have him witness the distention...ask if that is normal.
Other thoughts Non Celiac Gluten Sensitivity is also possible, no way to really test other then treating with a gluten free diet and a food diary.

You mentioned after a round of antibiotics....does plan rice, potatoes bloat you? Might be something like Candida which would have flourished out of control with antibiotics, it would flare to simple carbs, and things that kill it off.

 

The part about your “right to a copy of test results”. - yes and no.  Depends on the country.  In the US , the information belongs to the patient - that means you can say who sees it or doesn’t ( up to a point).  The hospital/ doctor office can charge you for a copy of this info.  Also, in the Us, it certainly is free to show you results while you are standing there.  The U.K. and Canada have similar laws but I am not as familiar and up to date on the specifics right now.  It is up to the patient to say “ let me see and how xolaun what I am seeing so I understand”.  Most doctors want patients to help understand 


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



Celiac.com Sponsor (A8-M):



PK-432 Explorer
On 6/7/2018 at 8:31 PM, TheWeatherMan said:

Hello 

my name is Lewis from the UK.

For the last 6 months Ive been having lots of gastro issues including bloating, flatulence, D and discomfort in my stomach.

It seem to start after I had some antibiotics for a dental infection and a course of strong pain killers.

i noticed all of a sudden that certain foods was giving me instant symptoms, especially gravy with a Sunday roast or dairy. 

Gradually I started feeling weak and tired and was losing weight, I even didn’t want to eat because I was worried about the symptoms. 

When I did eat I kept eating bread, cereal, my normal diet basically but things didn’t improve.

i felt weaker, lethargic and even forgetful at times. I went to doctors and my doctor said it is IBS and acid reflux (even though I didn’t have heartburn or acid reflux).

He decided to do a full CBC (complete blood count). Everything came back absolutely perfect, he even checked for Celiac and Chrones which both came back negative. 

I was surprised all my iron levels etc etc came back fine because I was feeling so low and tired all the time.

Anyhow I kept going back and he put me on Lansoprazole for 2 months blaming acid for my issues. For the first week or two my stomach did felt more settled but I still had lots if not more food sensitivities. 

It got to a point that I was having some undigested food when I went to the bathroom so I came off them.

when eating bread I get bloated or it seems gluten products (not sure if it’s just bread). But after a day or two I get flu like symptoms and I also start itching on my legs and the back of my hands near the top of my thumb and I got these little dot like spots that are hard to see.

ive introduced digestive enzymes with HCL into my diet and I seem to be able to tolerate bread/gluten and many other foods now but it doesn’t stop the feeling fatigued and I sometimes get a burning sensation in my stomach and middle section of my stomach when eating bread/food with gluten. 

I occasionally get lower back ache when all the symptoms hit me at once. My hair doesn’t look as healthy nor does my skin/nails and I feel as though I’m not getting the nutrition I need. My weight has levelled out now (last few months) and at times when I’m eating well I put weight on but when I have these symptoms really bad I lose it because I stop eating. 

My question is can it be gluten causing the issue even though my blood test for coeliac came back ok?

Thank you

lewis 

 

 

 

 

Have you done with complete panel of celiac disease which also includes celiac gene test, endoscopy with biopsy? 

Go for vitamins levels of B12, Folic acid and Ferritin and also Vitamin D.

 GET WELL SOON

Posterboy Mentor

Weatherman,

On 6/7/2018 at 10:31 AM, TheWeatherMan said:

I was surprised all my iron levels etc etc came back fine because I was feeling so low and tired all the time.

For energy try some Magnesium Citrate with meals or Magnesium Glycinate.

I hope this is helpful.

***this is not medical advice but Magnesium helped me with my energy levels.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

    2. - barb simkin replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

    3. - trents replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

    4. - barb simkin replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,330
    • Most Online (within 30 mins)
      7,748

    SEQ
    Newest Member
    SEQ
    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

    • trents
      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
×
×
  • Create New...