In the process of confirming diagnosis

[Emshultz]

Hi all. I had blood work about 6 weeks ago that came back positive for celiac.  The test was done because of recurring anemia and chronic (yet relatively new - past 2/3 years) GI issues. 

TtgA - 15 (0-4 negative 4-10 weak positive 10+ positive) 

I wasn’t (and still am not) sure if this number is high, but it was clear that it was positive. So I had an endoscopy and biopsy last week. 
 

I’m waiting on my appointment with the doc to discuss findings, but I got the results and it shows patchy villous blunting, increased intraepithelial lymphocytes, and gastric heterotopia. After a quick google, these all look consistent with celiac (except for maybe the hererotopia). 
 

My doc had already told me that even with a negative biopsy, my bloodwork was conclusive enough for a diagnosis and that she wanted me gluten free after the biopsy. So I’m here in day 2 of this new life. Just wanted to say hi and let you all know I’m here with you. 
 

Any thoughts on my test results or any words of wisdom on what to focus on in these early days is greatly appreciated!

Emily

[DJFL77I]

i dont think that's high...  mine was 100 at diagnoses..  and another teen girl on here i remember had 170+..

i have villous blunting too...  not sure about how patchy it is

[cyclinglady]

2 hours ago, DJFL77I said:

i dont think that's high...  mine was 100 at diagnoses..  and another teen girl on here i remember had 170+..

i have villous blunting too...  not sure about how patchy it is

It is a positive and that is all that counts.  Everyone is different.  Like a positive for a Hashimoto’s TOO antibodies test is usually around 35 and mine was 2,000.  Was I sicker than other patients?  I don’t think so.  No hypothyroidism symptoms (cold, gaining weight) but my thyroid was enlarged.  

Edited September 17, 2020 by cyclinglady

[cyclinglady]

Welcome,  Emily, to the club you never through about joining!  

The good news is now you can heal.  Your anemia should resolve pretty fast.  My doctor prescribed iron supplements.  My ferritin (iron stores improve within 3 months, so I no longer needed the supplement because I was absorbing iron from my food.  
 

Everyone is unique and has a different path to healing.  Ask any questions as we are here to help. 😊

[Emshultz]

Thanks to both of you.
 

I have had two iron infusions in the last year to help increase my iron stores. They were low! The infusions gave me back some energy and remediated my PICA, but my GI issues have persisted. I am glad to have some answers and am looking forward to healing for sure! 

In regards to my numbers, that’s what I was kind of wondering. Is a positive, a positive with no other implications? Or does a higher number mean a stronger case of celiac? Sounds like maybe a positive is a positive is a positive. 

[cyclinglady]

A few studies show a correlation of very high TTG tests with villi damage.   They were trying to see if they could skip the endoscopy in patients, especially children.  In Europe, they decided to to this and it really helps with medical costs. In the US, researchers are still on the fence.  The blood tests are good, but not perfect.  For example, I never have had a positive on the TTG Or EMA tests, just the DGP.  Odd.  But I had damage like yours.  We have had other members who were barely positive and still had significant damage like yours.  So, it is a toss up.  
 

Glad they found the root cause of your iron-deficiency anemia!  

[Kate333]

Hi Emily.  It sounds like you are doing everything right to heal your body.  And I'm glad you feel better after boosting your iron and that your TTG level was so low at diagnosis.

As a fellow newbie, the best advice I can give is to do everything you possibly can to ensure you are on a strict gluten-free diet.  For me, the best way to avoid "accidental" cross-contamination with G was by avoiding ALL processed, packaged foods and eating exclusively "natural" (fish, chicken, fresh fruits and veggies).   Many processed, packaged food manufacturers make "gluten-free" claims on their packages, but unless the package includes a "CERTIFIED gluten-free" label, I absolutely would not buy it.  Also G can be hidden and concealed on packaged foods by using vague and confusing terms on label contents (e.g., "modified food starch"..."genetically modified" etc. as well as color additives and fillers).  Also, if you are taking medications, make sure you check that any pills or vitamin supplements you take are gluten-free.  Here is a link that explains this more in-depth:   https://www.beyondceliac.org/living-with-celiac-disease/gluten-in-medication/   

[Redhed]

Hi! I’m new here, too, but wanted to say I’m in a similar situation. My IgA test was 25, with >14.9 being positive. I have a few GI symptoms, mostly GERD, and am Vit D deficient, but the endoscopy only noted “increased lymphocytes” in the duodenal biopsy. It didn’t list a stage and my doctor only noted, “take up a gluten-free diet to avoid full-blown celiac disease,” so I’m guessing (hoping) there’s not a lot of damage. 
 

It’s only been a week and so far it has not been easy to maintain this diet. My husband seems to think I can have cheat days and that every day is a cheat day. Sigh. 
 

Anyway, no words of wisdom but wanted to say hi and let you know you’re not alone with low test numbers but positive endoscopy results :) 

[trents]

"Fill-blown celiac disease"? I wonder what he meant by that but I'm assuming he meant significant damage to the villi. Otherwise, it's like being a little pregnant. 

[Scott Adams]

5 hours ago, Albert Can said:

Results of a new phase 2 clinical trial using technology developed at Northwestern Medicine show it is possible to induce immune tolerance to gluten in individuals with celiac disease. The findings may pave the way for treated celiac patients to eventually tolerate gluten in their diet.

Do you have a link you can share about this?

[cyclinglady]

1 hour ago, Redhed said:

Hi! I’m new here, too, but wanted to say I’m in a similar situation. My IgA test was 25, with >14.9 being positive. I have a few GI symptoms, mostly GERD, and am Vit D deficient, but the endoscopy only noted “increased lymphocytes” in the duodenal biopsy. It didn’t list a stage and my doctor only noted, “take up a gluten-free diet to avoid full-blown celiac disease,” so I’m guessing (hoping) there’s not a lot of damage. 
 

It’s only been a week and so far it has not been easy to maintain this diet. My husband seems to think I can have cheat days and that every day is a cheat day. Sigh. 
 

Anyway, no words of wisdom but wanted to say hi and let you know you’re not alone with low test numbers but positive endoscopy results

You are lucky that your villi are still intact.  The small intestine is about the size of a tennis court, so damage can be easy to miss, so do not think you are off the hook!  For example, I had patches of moderate to severe damage.  Some celiacs (Marsh Stage IIIC) have NO villi intact.   The lymphocytes always accompany celiac disease.  With your positive blood test and the lymphocytes, you have celiac disease.  
 

I just had anemia.  No GI symptoms.  I was pretty shocked.  I knew the diet well and I knew what it meant (no sneaking off to the bakery).    My husband had been gluten free for 12 years prior to my diagnosis.  Weird how you really can become “one” in marriage.  Two or three months after my diagnosis, I had spontaneous vertebrae fractures from osteoporosis.  That was way more devastating that my celiac disease diagnosis. I also realized a lot of little things that were occurring but thought they were part of aging.  
 

This is your opportunity to prevent some serious damage and not just to your gut.  Celiac disease affects every part of your body like teeth, nervous system, brain, joints, etc.  you can develop more autoimmune diseases too.  The goal is to calm down the autoimmune attack.   
 

It will take time to master the diet, but I would suggest meeting with a dietician who is celiac savvy or your doctor and take your husband to discuss the seriousness of adhering to the diet.  “Honey, brush your teeth before you kiss me, please”.   You will find your way.  It just takes time.  

[cyclinglady]

44 minutes ago, Scott Adams said:

Do you have a link you can share about this?

I found this:

https://news.northwestern.edu/stories/2019/10/new-treatment-may-reverse-celiac-disease/

 

The exciting news is that if they figure out how to stop the immune process, people who have other autoimmune disease (MS, Type 1 diabetes) or peanut allergies would be helped.  

[trents]

News about this research and it's phase 2 trial have been posted several times recently in various places on this forum. Again, I caution the community that the article falls short of saying this technology is a cure for celiac disease. If you read it carefully, it is saying, "After treatment with the technology, the patients were able to eat gluten with a substantial reduction in inflammation . . . Celiac patients treated with the COUR nanoparticle, CNP-101, showed 90% less immune inflammation response than untreated patients." If when the testing is all done, these same results are consistently reproduced and confirmed, this technology would at least seem to be effective in protecting against accidental and cross contamination gluten exposures. I do not think it will remove the need to avoid gluten altogether. 

And there are many questions about cost, insurance coverage and wide scale availability.

And let's not forget, even if we eliminate all threat of gluten-caused SB inflammation in the future, that will not reverse the dysfunction that has already been introduced into our immune system that produces allergic/intolerance type reaction to many other foods. Having said that, this technology may be of most benefit to those who get a celiac disease diagnosis early in life before the disease has had so much impact on their immune system.

[Sharona]

On 9/17/2020 at 11:07 AM, cyclinglady said:

Welcome,  Emily, to the club you never through about joining!  

The good news is now you can heal.  Your anemia should resolve pretty fast.  My doctor prescribed iron supplements.  My ferritin (iron stores improve within 3 months, so I no longer needed the supplement because I was absorbing iron from my food.  
 

Everyone is unique and has a different path to healing.  Ask any questions as we are here to help. 😊

Welcome Emily, I just want to let you know that if you are taking iron to boost your anemia it is best to eat real oranges for the vitamin C to make sure you do absorb the iron. If in a rush at the very least have vitamin C with it.

[Neytiri]

Hi everybody ! I'm new here, name's Irene, pleased to meet you :) I've just bumped into this site and I've decided to give it a try I've just read this topic and it comforts me that I'm not alone in this "battle" XD 

As regards the blood work, I've heard that it's not so "reliable" as it seems, so I think that you guys have made the right choice having biopsy and other similar exams done

When I was 16, I had blood exam done too because I had the typical symptoms of a celiac, i.e. swollen abdomen, lower abdomen pain, fatigue, weight loss, drowsiness, etc., whenever I ate wheat products. However, the result was negative and my parents didn't want me to have more specific, yet invasive exams done  Despite that, I decided to start eating certified, gluten-free products and rice and I felt better

This is the reason why I've just written that the blood work is not so reliable XD

[Neytiri]

9 hours ago, Sharona said:

Welcome Emily, I just want to let you know that if you are taking iron to boost your anemia it is best to eat real oranges for the vitamin C to make sure you do absorb the iron. If in a rush at the very least have vitamin C with it.

I agree with you Sharona 👍I must add that I suffered from anemia too and my doctor told me to eat more meat and to add some lemon juice on it