Did I do the right thing?

[Aussienae]

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....

 

[Aussienae]

Anyone able to advise on these results??

[RMJ]

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]

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]

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]

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]

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 June 3, 2023 by knitty kitty
Typo correction

[Aussienae]

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]

@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]

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]

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]

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]

@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]

2 minutes ago, Aussienae said:

 

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

[knitty kitty]

@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]

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]

Yes, it would be very odd indeed.  

[knitty kitty]

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]

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

[Scott Adams]

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

This article also might be helpful:

 

[Aussienae]

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]

@Scott Adams,

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

[Scott Adams]

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:

 

[Aussienae]

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