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

Did I do the right thing?

Aussienae
 Share

Recommended Posts

Aussienae Contributor
Aussienae
Posted

Hi All

I was diagnosed in Feb 22 via bloods. After months of being unwell, I was in the hospital when I was told I had Coeliacs Disease. I asked if I should have a endoscopy to confirm, but the doctor, as well as my GP, suggested to go immediately gluten free due to how unwell I was and the fact I had 4 x positive blood results. Did I do the right thing?

Deamidated gliadin IGA 85 (<20)

Deamidated gliadin IGG 26 (<20)

TTG IGA 67 (<20)

TTG IGG 226 (<20)

My levels are back to zero now (it took 5 months gluten-free). But lately Ive been having some syptoms again....

 

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

Celiac.com Sponsor (A8-M):


Aussienae Contributor
Aussienae
Posted
  • Author

Anyone able to advise on these results??

RMJ Mentor
RMJ
Posted

All four tests positive certainly is a good indication for celiac disease.  I’m a little surprised you got the levels down to normal in 5 months, but my surprise may be because it took me 6 years to get deamidated gliadin IgA in the normal range.

Has something changed in your diet around the time that symptoms started again?  Or a change in medication? Or anything else that could contaminate your environment with gluten?

Aussienae Contributor
Aussienae
Posted
  • Author

Nothing changed that I can think of. Plus I had my levels rechecked and they are zero. 

Its not all my original symptoms, but some of them. Its been about 7 weeks and its not getting better. Ive had multiple blood tests, and been to the doctor and hospital. 

knitty kitty Grand Master
knitty kitty
Posted

Have you been checked for vitamin and mineral deficiencies?  

B12 Cobalamine, iron, Thiamine, zinc and other nutrients are frequently deficient or low in the newly diagnosed.  

If our bodies don't get enough of the vitamins and minerals it needs, our bodies don't function properly.  

Discuss with your doctor the benefits of supplementing while you are healing.

Aussienae Contributor
Aussienae
Posted
  • Author
3 minutes ago, knitty kitty said:

Have you been checked for vitamin and mineral deficiencies?  

B12 Cobalamine, iron, Thiamine, zinc and other nutrients are frequently deficient or low in the newly diagnosed.  

If our bodies don't get enough of the vitamins and minerals it needs, our bodies don't function properly.  

Discuss with your doctor the benefits of supplementing while you are healing.

I had everything checked. I had a iron infusion, now my ferritin is slightly high. Everythung else was within range

knitty kitty Grand Master
knitty kitty
Posted
(edited)

Blood tests are not accurate for the B vitamins.  Blood tests can reflect how much was in your diet the last couple of days, but they don't measure the amount of vitamins stored inside cells or how well the body is metabolizing the vitamins.  

Since the eight essential B vitamins are water soluble, you might want to try supplementing them in a B Complex supplement and look for improvement.

What are the symptoms you are having?

Edited by knitty kitty
Typo correction
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Aussienae Contributor
Aussienae
Posted
  • Author
19 minutes ago, knitty kitty said:

Blood tests are not accurate for the B vitamins.  Blood tests can reflect how much was in your diet the last couple of days, but they don't measure the amount of vitamins stored inside cells or how well the body is metabolizing the vitamins.  

Since the eight essential B vitamins are water soluble, you might want to try supplementing them in a B Complex supplement and look for improvement.

What are the symptoms you are having?

Constant lower abdo pain, pelvic pain, full bowel feeling, fatigue.....

knitty kitty Grand Master
knitty kitty
Posted

@Aussienae,

Do you include dairy in your diet?  Lactose intolerance can be a problem, but casein, the protein in dairy, can cause the same autoimmune reaction as gluten because a segment of the casein protein resembles a segment of gluten protein.

Aussienae Contributor
Aussienae
Posted
  • Author
4 minutes ago, knitty kitty said:

@Aussienae,

Do you include dairy in your diet?  Lactose intolerance can be a problem, but casein, the protein in dairy, can cause the same autoimmune reaction as gluten because a segment of the casein protein resembles a segment of gluten protein.

I do include dairy, but only lactose free. I might need to try a few weeks with out any dairy and see if I get better....

Is there a test to see if I do have an intolerance to casein?

knitty kitty Grand Master
knitty kitty
Posted

Definitely discontinue dairy! 

Some people go beyond molecular mimicry (the body mistaking casein as gluten) and develop an allergy to casein which can cause a whole ballpark full of other problems like eczema, asthma, and anaphylaxis.  

The AIP diet eliminates for a while the foods most likely to irritate and to cause inflammation.  During that time, the body can calm down the inflammation and begin to heal.  Once the body has recovered, foods can be added back in slowly as tolerated.  

Yes, eliminate dairy, give your body a chance to heal!

Aussienae Contributor
Aussienae
Posted
  • Author
20 minutes ago, knitty kitty said:

Definitely discontinue dairy! 

Some people go beyond molecular mimicry (the body mistaking casein as gluten) and develop an allergy to casein which can cause a whole ballpark full of other problems like eczema, asthma, and anaphylaxis.  

The AIP diet eliminates for a while the foods most likely to irritate and to cause inflammation.  During that time, the body can calm down the inflammation and begin to heal.  Once the body has recovered, foods can be added back in slowly as tolerated.  

Yes, eliminate dairy, give your body a chance to heal!

Thank you for that info! I hadnt really thought about the fact casein might be the issue. I definitely have inflammation but I wasnt sure what might be causing it 🙂

knitty kitty Grand Master
knitty kitty
Posted

@Aussienae,

You're being brave to give up dairy!  I understand how difficult it is to make changes.  But the rewards on the other side of healing are very worthwhile!  

Keep us posted on your progress!

Best wishes!

Aussienae Contributor
Aussienae
Posted
  • Author
2 minutes ago, Aussienae said:

 

Does anyone else have a informative comment on my original bloods? Im interested to know people opinions 

knitty kitty Grand Master
knitty kitty
Posted

@Aussienae,

Yes, I think you did the right thing to go gluten free immediately after the blood tests because they definitely are positive for Celiac Disease.  

You can always get a genetic test if you are still wobbling.  The presence of Celiac genes does not mean you have Celiac Disease.  It means you have the potential to develop Celiac Disease.  The Celiac genes need a trigger, such as an infection, to turn the genes on.  According to your antibody specific blood tests, your Celiac genes appear to be turned on.  

There are more Celiac genes than just the two most common Celiac genes tested for by some tests (HLA DQ2 and DQ8).  You only need one.  

Aussienae Contributor
Aussienae
Posted
  • Author

Thanks for your reply! 

I think I do have the gene, but I dont have a copy of that test. My husband has it too

It would be odd for all 4 tests to be positive if it wasnt celiac wouldnt it?

 

 

 

 

knitty kitty Grand Master
knitty kitty
Posted

Yes, it would be very odd indeed.  

knitty kitty Grand Master
knitty kitty
Posted

There's an article (about how high antibody levels reflect how severely damaged the small intestine is) around here some place.  Maybe @Scott Adams can help me find it.  

So, your doctors were wise to not put you through additional stress in your degree of illness.  They may want you to do an endoscopy in future to check on your healing progress.  But concentrate on healing for now.  We're here to support you.  

Aussienae Contributor
Aussienae
Posted
  • Author

Thank you so much! I really appreciate your support and info! 

Scott Adams Grand Master
Scott Adams
Posted

I'm not sure exactly which article you mean @knitty kitty, was it a recent one?

This article also might be helpful:

 

Aussienae Contributor
Aussienae
Posted
  • Author
1 hour ago, Scott Adams said:

I'm not sure exactly which article you mean @knitty kitty, was it a recent one?

This article also might be helpful:

 

Thanks for that info. 

Just wondering in your thoughts on my original blood results? Do you think it definitely would indicate celiac disease?

knitty kitty Grand Master
knitty kitty
Posted

@Scott Adams,

Yes, fairly recently, by Jefferson, I believe.  I'll look through my bookmarks again.  Thanks for trying!  

Scott Adams Grand Master
Scott Adams
Posted
17 hours ago, Aussienae said:

Thanks for that info. 

Just wondering in your thoughts on my original blood results? Do you think it definitely would indicate celiac disease?

You have 3 strong positive tests for celiac disease which makes it extremely likely that you do have it. This article talks about the probabilities for a positive on each of these tests:

 

  • 1 month later...
Aussienae Contributor
Aussienae
Posted
  • Author

Just an update!

 

4 week off of dairy and noticing some improvements. 

 

Had an endoscopy and colonoscopy today! Endoscopy showed healing but will have to wait for biopsies. Colonoscopy showed moderate diverticulitis, which may be what caused my pain. Next step is to have an ultrasound and see a dietitian...

 

Fingers crossed im getting somewhere now 

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
 Share
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. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
    2. BlessedinBoston
      - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      @Jmartes71, I understand your frustration and anger. I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone. My doctors did not recognize nutritional deficiencies. Doctors are trained in medical learning institutions that are funded by pharmaceutical companies...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in...
    5. marion wheaton
      - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,410
    • Most Online (within 30 mins)
      7,748
    Marilyn Gingras
    Newest Member
    Marilyn Gingras
    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

    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.