Blindsided by positive test results

[trents]

What is confusing?

[knitty kitty]

  On 1/11/2023 at 5:03 AM, Fairy92 said:

Hi Celiac community 

I finally have some results but nothing overly helpful yet. I am waiting for an appointment with my gastrointestinal doctor. 

This is what a GP said. 

"Your results were mostly normal. There was a small area of mild non-specific inflammation but it did not look like coeliac disease. Because they were not 100% normal, however, it would be worth discussing them with the gastroenterologist at your next gastroenterology appointment"

 

My bloods were:

 I'm in New Zealand so they may be different measurements. 

Anti TTG IgA: 78.0CU (normal <20)

TTG IgA interpretation: weak positive 

Endomysial Ab: weak positive 

Deamidated Gliadin Peptide IgG: 27CU (normal <20)

DGP IgG interpretation: weak  positive 

I've been gluten free for 3 weeks now and have noticed a big difference in how I feel. No more gas, much less bloating, no more nausea, even my bruising on my legs is less. 

 

However this GP seems to think its not coeliac. I don't know when I will be seeing the gastroenterologist so just interested in your opinions as you guys know a lot! 

 

I ate gluten prior to the gastroscopy of my small intenstine. 

 

Thank you! 

 

Felicity 

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Hello! Good to hear from you again.

I'm glad you got some results back.  The pathology report about the biopsies should tell more.  While things may look okay with the naked eye, the damage from Celiac can be microscopic.  

If laid out flat, the intestines cover an area the size of a tennis court.  Areas of damage may be patchy or further down out of the reach of the scope. 

So wait for the pathology report at the GI doctor's appointment.

You have positive blood tests.  Not everyone has extremely high positives on their tests.  A positive is a positive.  

Testing for Celiac genes  is another option.  

Let us know what you find out!

[Fairy92]

  On 1/11/2023 at 6:33 AM, trents said:

What is confusing?

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Oh just that my bloods were positive but the histology from the biopsy were not obviously coeliac. 

 

[trents]

  On 1/11/2023 at 9:10 AM, Fairy92 said:

Oh just that my bloods were positive but the histology from the biopsy were not obviously coeliac. 

 

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So, you had the biopsy repeated and are now waiting on the microscopic lab report but the one who did the scoping reported that nothing looked abnormal to the naked eye? Is this correct?

Edited January 11, 2023 by trents

[Scott Adams]

  On 1/11/2023 at 5:03 AM, Fairy92 said:

Hi Celiac community 

I finally have some results but nothing overly helpful yet. I am waiting for an appointment with my gastrointestinal doctor. 

This is what a GP said. 

"Your results were mostly normal. There was a small area of mild non-specific inflammation but it did not look like coeliac disease. Because they were not 100% normal, however, it would be worth discussing them with the gastroenterologist at your next gastroenterology appointment"

 

My bloods were:

 I'm in New Zealand so they may be different measurements. 

Anti TTG IgA: 78.0CU (normal <20)

TTG IgA interpretation: weak positive 

Endomysial Ab: weak positive 

Deamidated Gliadin Peptide IgG: 27CU (normal <20)

DGP IgG interpretation: weak  positive 

I've been gluten free for 3 weeks now and have noticed a big difference in how I feel. No more gas, much less bloating, no more nausea, even my bruising on my legs is less. 

 

However this GP seems to think its not coeliac. I don't know when I will be seeing the gastroenterologist so just interested in your opinions as you guys know a lot! 

 

I ate gluten prior to the gastroscopy of my small intenstine. 

 

Thank you! 

 

Felicity 

Expand Quote  

You may want to consider a different doctor, as you have more than one positive test for celiac disease, and I am not sure how a 78 on a TTG IgA score where 20 is the mark could be interpreted as a "weak positive."

In any case, the fact that you also have some gut damage, plus improvement of symptoms on a gluten-free diet at two other factors that indicate you likely have celiac disease.

[Fairy92]

To clarify 

My blood results are above and were positive for coeliac markers 

This is the histology under microscope report.

Some changes but nothing major. I'm wondering if we found my coeliac disease early? I believe it only started in the last year. 

The gastroenterologist won't see me until 23rd February and is apparently "not concerned". So I feel like I'm being a bit forgotten. 

However, I noticed I felt different not eating gluten so I will continue to do so but I don't think I have the right to claim "coeliac" at this point 

 

What a stressful and confusing journey. The waiting is hard and I still feel like I don't know what is happening 

[trents]

"correlation is recommended"?

[Scott Adams]

Thank you for clarifying this! I've already mentioned many times in this forum that I am highly skeptical of the fairly recent "weak positive" category on celiac disease blood test results--for example, why not also include a "weak negative"? Anyway, your results are a strong positive, and I was worried that they are doing some more strange category changes like this.

[trents]

Yes, your tTG-IGA is certainly not a weak positive!

[Fairy92]

  On 1/12/2023 at 3:06 PM, trents said:

"correlation is recommended"?

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I'm not sure what that means? 

Has anyone seen a situation like mine? 

Its not nice that the specialist has kind of left me to it with more waiting and unknown 

[trents]

Can you call his office and ask what that means?

[Fairy92]

  On 1/12/2023 at 9:37 PM, trents said:

Can you call his office and ask what that means?

Expand Quote  

This is the unfortunate thing about the public health system. I can't contact him

I have emailed and said I am frustrated they are leaving me so long. 

I will make an appointment with my usual doctor as she is very good and can hopefully offer some insight. 

 

  On 1/12/2023 at 9:40 PM, Fairy92 said:

This is the unfortunate thing about the public health system. I can't contact him

I have emailed and said I am frustrated they are leaving me so long. 

I will make an appointment with my usual doctor as she is very good and can hopefully offer some insight. 

 

Expand Quote  

Meaning I emailed the hospital booking office. 

[trents]

Here in the states, I can call the medical group the physician is with and leave a phone message for the medical assistant connected with that doctor. The assistant will then communicate with the physician and get back to me with the answer to my question.

[LP023]

  On 1/11/2023 at 5:03 AM, Fairy92 said:

Hi Celiac community 

I finally have some results but nothing overly helpful yet. I am waiting for an appointment with my gastrointestinal doctor. 

This is what a GP said. 

"Your results were mostly normal. There was a small area of mild non-specific inflammation but it did not look like coeliac disease. Because they were not 100% normal, however, it would be worth discussing them with the gastroenterologist at your next gastroenterology appointment"

 

My bloods were:

 I'm in New Zealand so they may be different measurements. 

Anti TTG IgA: 78.0CU (normal <20)

TTG IgA interpretation: weak positive 

Endomysial Ab: weak positive 

Deamidated Gliadin Peptide IgG: 27CU (normal <20)

DGP IgG interpretation: weak  positive 

I've been gluten free for 3 weeks now and have noticed a big difference in how I feel. No more gas, much less bloating, no more nausea, even my bruising on my legs is less. 

 

However this GP seems to think its not coeliac. I don't know when I will be seeing the gastroenterologist so just interested in your opinions as you guys know a lot! 

 

I ate gluten prior to the gastroscopy of my small intenstine. 

 

Thank you! 

 

Felicity 

Expand Quote  

Update?

[Fairy92]

  On 1/26/2023 at 5:29 AM, LP023 said:

Update?

Expand Quote  

Nothing yet 

I have an appt with a gastro doctor on 2nd February. I will definitely update after that 😊

[cristiana]

Hello @Fairy92

Thank you so much for your update.

It is great to hear that after coming off gluten you are feeling better.  That is certainly good news.

However, re: your biopsy results, how frustrating not to have a straight forward "yes" or "no".

I am glad you have your appointment with the gastroenterologist set up in less than a week, so at least the wait won't be too long.  Since my own diagnosis, my GP has often been concerned about a particular issue related to liver enzyme tests, ordering blood retests, lots of stress involved - only for me to be told when I finally see the gastroenterologist that he isn't worried at all, it's something that affects coeliacs.  What this has taught me is to not worry too much about anything until I have had a face-to-face with my consultant.  

The inflammation could be related, just an unusual presentation, or unrelated to coeliac disease.   If you were to have another biopsy next week it might have disappeared.  Do you take NSAIDs (aspirin, ibuprofen?) - I wonder if perhaps the inflammation might have been caused by that?

I am sorry this isn't probably of much help, but I am sure you will get some helpful answers from your consultant.

Keep us posted!

Cristiana

Edited January 26, 2023 by cristiana

[trents]

  On 11/17/2022 at 7:34 AM, Fairy92 said:

Hello, Celiac Community 

I never expected to be here right now. 

This afternoon my doctor called and told me a blood test she requested for me as part of a check up came back positive and suggestive of celiac disease 

When I look at the symptoms, it makes sense. 

My question is, what are the chances of it being a false positive? 

I have been referred for a gastroscopy to confirm the diagnosis but I'm stuck down a Google rabbit hole 

Any advice or knowledge is very much appreciated. 

Here are my results. I'm in New Zealand so they may be different measurements. 

Anti TTG IgA: 78.0CU (normal <20)

TTG IgA interpretation: weak positive 

Endomysial Ab: weak positive 

Deamidated Gliadin Peptide IgG: 27CU (normal <20)

DGP IgG interpretation: weak positive 

 

Thank you! 😊

 

Expand Quote  

Fairy92,

Every antibody test known to man was run on you and all were positive! How can your GP conclude you don't have celiac disease? On top of that, you are feeling definitely better now that you are on a gluten free diet. But if you have any more testing done, say your gastro doc wants to do another endoscopy with biopsy, it will likely have been invalidated due to the fact you have gone gluten free already.