Help with test results

[mk123]

Hi! I am new to this forum.  My daughter saw a primary care physician because of symptoms - gas, bloating, diarrhea, constipation, depression, tingly fingers, etc. The doctor ordered blood tests. The report reads: Her IGA Total (Serology Cascade) 74 Standard range was 85-499 and her Tis Transglut AB IGA was 63.6 standard range was <15.  The other results in panel were negative.  She is also low on vitamin D. We are scheduled for endoscopy in a couple of weeks.  Do these numbers indicate Celiac? The doctor wrote in her file that she is positive for it and needs biopsy to confirm.  There is no family history of Celiac  - Thank you! 

[trents]

Yes. Her tTG-IGA is unequivocally positive at 63.6, plus the classic symptoms and low D. However, her total IGA is low which can skew antibody test results, but usually on the low side of skew.

How old is your daughter?

It is estimated that 1% of the population have celiac disease but most go undiagnosed because of the general ignorance of the medical community about this disease. That is improving but slowly. It is also true that many celiacs are "silent," meaning they have few or even no symptoms that "scream" celiac disease, at least for some years until the disease progresses and causes more body system damage. So just because there is no history in the family of celiac disease does not necessarily mean much. If it turns out that your daughter has celiac disease then I can promise you there are others in the family who also have it. If your daughter has celiac disease then there is a 44% chance that other first degree relatives will have it as well. So if she does, you and your other family members should be tested. Notice I used the term "active celiac disease." A high percentage of the population have the genetic potential to develop celiac disease but most of them don't develop the disease. It is latent until some triggering stress event (e.g., a viral infection) turns the genes on, as it were, such that what was latent is then expressed.

Sounds like your daughter needs to be on some high potency vitamins and mineral supplements. Damage to the villi in the small bowel can greatly reduce the efficiency of that organ to absorb nutrients from food. It might be a good idea to have her checked for other vitamin and mineral deficiencies and, depending on her age, have a dexascan done for bone density.

[mk123]

Hi! Thank you for answering so quickly! My daughter is 20. She just started having all of these issues a year ago after getting a virus. Could the low Total IGA and higher TTG IGA be something else? 

[trents]

The TTG IGA is the best all around test for celiac disease. There are other antibody tests that are more sensitive and others that are more specific but the TTG IGA is the best combination of both and therefore, the most popular test run by physicians. If that value is high, it's a pretty certain indicator of celiac disease. Along with her classic symptoms and the fact that their onset came on the heels of a viral infection leaves no doubt in my mind.

If you decide to go forward with the endoscopy/biopsy, keep in mind that your daughter needs to be consuming normal amounts of gluten daily to prevent the villi from healing and invalidating the biopsy. The recommendation is at least two slices of wheat bread daily or the equivalent. Many make the mistake of starting a gluten-free diet before testing and that just muddies the waters.

[mk123]

Thank you so much! I will have her continue to eat gluten until her biopsy. You have been so informative. I really appreciate it!

[trents]

You're welcome. Glad you have joined the forum community. We have amassed a lot of collective knowledge here over time concerning celiac disease and gluten sensitivity that, to be honest, exceeds the awareness of most physicians. Please keep us posted concerning what you find out after the endoscopy/biopsy. We will be here for the two of you if she is diagnosed with celiac disease as there is a significant learning curve when it comes to avoiding gluten.

[mk123]

7 minutes ago, trents said:

You're welcome. Glad you have joined the forum community. We have amassed a lot of collective knowledge here over time concerning celiac disease and gluten sensitivity that, to be honest, exceeds the awareness of most physicians. Please keep us posted concerning what you find out after the endoscopy/biopsy. We will be here for the two of you if she is diagnosed with celiac disease as there is a significant learning curve when it comes to avoiding gluten.

Thank you again. This is all so overwhelming and it is nice to have a place to go to ask some questions to such informed people.  😀

[trents]

Yes, it is overwhelming at first. All of us on the forum have "been there done that" so we know what it feels like. It is just so hard to believe that wheat, which is viewed the world over as the "staff of life" can be harmful to our bodies. There is the learning curve with regard to achieving gluten-free eating and then there is hardest part of all, the social impact of having to eat gluten free. Especially for a 20 year old.

[mk123]

On 6/8/2021 at 3:44 PM, trents said:

Yes, it is overwhelming at first. All of us on the forum have "been there done that" so we know what it feels like. It is just so hard to believe that wheat, which is viewed the world over as the "staff of life" can be harmful to our bodies. There is the learning curve with regard to achieving gluten-free eating and then there is hardest part of all, the social impact of having to eat gluten free. Especially for a 20 year old.

Hi! We were able to get in for the endoscopy. I was wondering if you know what these findings mean. We are anxious for for biopsy results. Thank you! You are so helpful!

Z-line irregular, 41 from incisors, Erythematous mucosa in antrum, Duodenal mucosal changes seen, suspicious for celiac. Biopsy 

[trents]

Erythema (from the Greek erythros, meaning red) is redness of the skin or mucous membranes, caused by hyperemia (increased blood flow) in superficial capillaries. It occurs with any skin injury, infection, or inflammation.

In biology, antrum is a general term for a cavity or chamber.

"Duodenal mucosal changes" - damage to the small bowel lining. The duodenum is the first part of the small bowel, right below the stomach.

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Celiac disease causes damage to the villi that line the small bowel because of persistent inflammation. This is the defining characteristic of celiac disease. It results in impaired nutrient absorption since the villi constitute the nutrient uptake organ of the body.

[mk123]

So in your opinion, would you say that she is positive for celiac?

[trents]

Absolutely! There are a few other diseases that can cause damage to the villi and also some medications but I would feel there is a 99% chance it is celiac disease. And her blood antibodies also pointed to celiac disease. Yet, you seem to have doubts.

Edited June 15, 2021 by trents

[mk123]

2 minutes ago, trents said:

Absolutely! There are a few other diseases that can cause damage to the villi and also some medications but I would feel there is a 99% chance it is celiac disease.

That is how I am feeling also, Lets hope the biopsy confirms.  My daughter started her gluten free diet.  As for eating out, How worried should she be about cross contamination at a restaurant.  She is already getting worried about going back to school in the fall and then to London for abroad in the spring with celiac.  

[trents]

Now the rest of you need to get checked. There is a 44% chance that other first degree relatives will have or will develop at some point, celiac disease.

Edited June 15, 2021 by trents

[trents]

6 minutes ago, mk123 said:

That is how I am feeling also, Lets hope the biopsy confirms.  My daughter started her gluten free diet.  As for eating out, How worried should she be about cross contamination at a restaurant.  She is already getting worried about going back to school in the fall and then to London for abroad in the spring with celiac.  

Wait! I'm confused. She already had the biopsy and the results confirm what the blood tests showed. Why do you say, "Let's hope the biopsy confirms"? Do you mean you are waiting for the physician consult following the biopsy to explain the results?

[mk123]

12 minutes ago, trents said:

Wait! I'm confused. She already had the biopsy and the results confirm what the blood tests showed. Why do you say, "Let's hope the biopsy confirms"? Do you mean you are waiting for the physician consult following the biopsy to explain the results?

That was just the findings on the report from endoscopy that the GI doctor was able to see. We are waiting for pathology results from the biopsies that were taken.  He said we would find out in a week or two

 

12 minutes ago, trents said:

Absolutely! There are a few other diseases that can cause damage to the villi and also some medications but I would feel there is a 99% chance it is celiac disease.

That is how I am feeling also, Lets hope the biopsy confirms.  My daughter started her gluten free diet.  As for eating out, How worried should she be about cross contamination at a restaurant.  She is already getting worried about going back to school in the fall and then to London for abroad in the spring with celiac.  

[RMJ]

2 hours ago, mk123 said:

My daughter started her gluten free diet.  As for eating out, How worried should she be about cross contamination at a restaurant.  She is already getting worried about going back to school in the fall and then to London for abroad in the spring with celiac.  

Different people with celiac disease react to different amounts of gluten.  Cross contamination is definitely something to think about. If not in control of her food, she might consider taking the enzyme GliadinX with meals that could be contaminated.  It is only meant to help with contamination, not a full gluten meal.

[mk123]

4 hours ago, RMJ said:

Different people with celiac disease react to different amounts of gluten.  Cross contamination is definitely something to think about. If not in control of her food, she might consider taking the enzyme GliadinX with meals that could be contaminated.  It is only meant to help with contamination, not a full gluten meal.

Thank you! I will look into that enzyme for her