Help understanding these results!

[Natalie S]

We are struggling to understand these results for my daughter. I would appreciate any help you can offer. 
A) DUODENUM, BIOPSY:
MILD CHRONIC NON-SPECIFIC DUODENITIS.
VILLOUS ARCHITECTURE IS PRESERVED.
STOMACH, BIOPSY:
MILD REACTIVE GASTROPATHY WITH FOCAL
INTESTINAL METAPLASIA. NO H. PYLORI
SEEN (CONFIRMED BY H. PYLORI
IMMUNOHISTOCHEMICAL STAIN).

[trents]

First, how old is your daughter?

She doesn't have an H. Pyori bacterial infection so that it is not causing the "intestinal metaplasia" or the duodenitis.

Mild reactive gastropathy with focal Intestinal metaplasia means there are changes in the cells that line either the stomach or the esophagus (or some of both) such that they are becoming more like the cells that line the intestine. I don't mean to frighten you but I would be concerned about that. But it is focal, meaning not wide spread. Probably in the bottom of the stomach where it joins the small bowel.

Duodenitis is inflammation of the duodenum, the first part of the intestines (small bowel) as it leaves the stomach. It is mild. 

"Villous architecture is preserved" means the villi that line the small bowel are not worn down as you would see in long term celiac disease that has not been addressed by a gluten free diet. This does not rule out the possibility that she has celiac disease but if so, would indicate it was caught early.

Here's an article with a good pic of healthy villi: 

https://www.verywellhealth.com/understanding-intestinal-villi-562555

In celiac disease that has gone on for a significant time without being addressed by a gluten free diet those finger-like projections that are  the villi are worn down. This is the area of the bowel where all of our nutrition is absorbed so when they get worn down it compromises the body's ability to absorb nutrients.

[Natalie S]

Thank you. She just turned 18. She was tested because she has had some issues recently but her dad was also recently diagnosed with Celiacs. 
Thank you for your response. It confirmed some of what my research was showing but there are so many different articles out there, many of which are not in my civilian language!

[trents]

Can you be more specific about which IGA test or tests were run? Would you be willing to share the test names and numbers, including reference ranges? There is profound lack of knowledge about celiac disease and diagnosis in the medical community as a whole. Many doctors, especially general practitioners, will only order one IGA test (tTG-IGA) which can miss those who actually do have celiac disease. There is also a total IGA test which is not really a celiac test but should be run to check for low total IGA, which can skew other IGA tests toward the negative range. There are also antibody tests that can be run for celiac disease that are non-IGA in nature and will often catch those who do have celiac disease but whose immune response is eccentric.

By any chance, was your daughter trying to eat gluten free or low gluten?  Just wondering because it occurred to me that in families where one member needs to eat gluten free it often winds up that everyone else winds up eating much lower amounts of gluten. Cutting back on gluten or going gluten free can sabotage celiac testing, both antibody testing and biopsy because it results in reduced inflammation and thus lower antibody test scores and also healing of the villi.

[trents]

Natalie S, you seem to be double-posting for some reason.

[Natalie S]

She has been eating purposefully gluten filled diet just for that reason.  We didn’t want to skew the test. She had a negative IGA which they considered inconclusive but her IGG came back normal.  They decided to proceed with the endoscopy to get a better indication. I do not recall at this time what the levels were exactly on those blood tests.
The symptoms she displays are stomach pain after meals, diarrhea, and sometimes constipation, she has been anemic for a long time, had headaches on and off for years, and also has had pretty significant acne. She eats quite a bit, but does not really gain weight. 

Sorry. I was hitting quote and reply. I am not used to using a forum like this. 

[trents]

Thanks for the additional info. 

Concerning her anemia, the intestinal metaplasia might come into play. Has any doctor talked to you about pernicious anemia? The parietal cells that line the stomach produce something called "intrinsic factor" which is an enzyme necessary for the absorption of B12. B12, in turn, is necessary for the absorption of iron. People with pernicious anemia have experienced the death of the parietal cells, often as a result of an autoimmune process. If her stomach lining cells are turning into intestinal lining cells this might reduce the number of parietal cells.

Has you daughter had any genetic testing done to ascertain her genetic potential for celiac disease?

Edited August 12, 2022 by trents

[Natalie S]

No genetic testing has been done and these are all new terms to me.  I will certainly bring it up to her doctor. 

 Strangely my other daughter and myself have  higher than normal levels of B12. We were both told not to take B12 or multi-vitamins but no one seems to understand why the levels are high and our bodies do not seem eliminate it.   Not sure if there is something genetic going on here but neither of our blood tests came back with abnormal IGA 

[trents]

There is a gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease and is 10x more common than celiac disease. Diagnostically, the difference is that NCGS does not damage the villi and does not, therefore, produce antibodies. Some experts believe it can be a precursor to celiac disease. There is no test for NCGS. Celiac disease must first be ruled out.

You said: "She has been eating purposefully gluten filled diet just for that reason." Was she eating gluten free before that? Prior to antibody serum testing the Mayo Clinic recommends consuming an amount of gluten equivalent to two slices of wheat bread daily for 6-8 weeks before the blood draw and for at least two weeks before the endoscopy/biopsy. So, if her "gluten challenge" was significantly shorter than that, the testing might not have been accurate.

[Natalie S]

No. She has never been on a gluten free diet. 

[trents]

There is genetic testing for celiac disease potential through 123 and me. There are two primary genes that (so far) have been linked to the potential for celiac disease: HLADQ2 and HLADQ8. Having both genes increases the risk of developing celiac disease over having just one. The DQ2 gene is associated with high sensitivity and more severe reactions to gluten. A high percentage of the general population (about 40% I think) has one or both of the genes but since only about 1% of the general population actually develop celiac disease, having the genes does not equate to a guarantee of developing celiac disease. It just establishes the potential. In addition to the genes, it takes some kind of biological stress event to trigger active celiac disease, like a viral infection. 

Research results vary widely in establishing the probability that close family members will develop active celiac disease if a close relative has it. You often here the figure of 10% but one large (over 300 participants) and recent study done by the Mayo Clinic put the chances of developing active celiac disease at 44% if a first degree relative has it. I mention this because your husband has been diagnosed with celiac disease and your daughter has many symptoms. 

IMO, the next step for your daughter would be to trial a gluten-free diet and see if her symptoms improve. This would apply whether she has celiac disease or NCGS. The antidote for both is the same. 

[Natalie S]

We were thinking that as well. That it is probably in her best interest to try a gluten free diet anyway. As well as to be conscious of foods that may cause acid  reflux. 
I did finally speak with her doctor and he is waiting for more clarification from the pathologist on the meta plasma as we as the duodenitis.   
Thank you for all of your help thus far. 

[trents]

About two years ago I started giving attention to eliminating foods that contribute to acid reflux. I had been on a proton pump inhibitor for the reflux for a number of years and it worked for the reflux. But I became more and more concerned about the other problems that long term PPI can cause. So, I made up my mind to get off the PPI but it was very difficult. Took me about a year to feel I was getting on top of it. I cut out things like coffee and tomatoes/tomato juice but there are many more foods that can contribute to acid reflux that should be avoided. It's a tough challenge because it eliminates so many things you like and so many things that are healthy. I'm 71 years old though so maybe your young daughter will find healing sooner.

[April42]

Hey there! I’m having a similar issue! Huge amount of celiac disease symptoms but unclear test results due to low diet in gluten prior. Was she eating at least 2 slices of bread a day for at least a few weeks before her tests? It takes quite a bit. Also a gluten-free diet helps with acne kinda quickly...it’s so hard to eliminate gluten completely that it’s been hard for myself to see super clear results but have definitely seen a big difference in my acne being gluten-free since spring but after risky eat outs during a recent beach trip & realizing it’s in most MAC lipsticks I’ve broke out a bit again:/ Does her acne tend to linger for weeks or months before healing? Or burn or itch? I’ve been searching for help, posting in here & am at wits end because my 2 daughters are both have so many symptoms too:( My villi was preserved architectured too but I read somewhere doc’s don’t take out enough biopsies to check for celiac disease as the damage can be hiding in the intestines as they are so large that if taken out to compare size would cover an entire tennis court!

[trents]

April42, celiac disease only affects the lining of the small bowel (the duodenum and duodenum bulb), not the entire intestine. But yes, you are correct. The damage can be patchy and many doctors do not take enough samples from the duodenum and duodenum bulb and so miss the damage.

Edited August 14, 2022 by trents

[April42]

On 8/14/2022 at 9:39 AM, trents said:

April42, celiac disease only affects the lining of the small bowel (the duodenum and duodenum bulb), not the entire intestine. But yes, you are correct. The damage can be patchy and many doctors do not take enough samples from the duodenum and duodenum bulb and so miss the damage.

Oh ok! So are you familiar with the DH rash? I think I may have both types of it. Some of mine like to reappear seems like once healed. I was able to get a script for dapsone from my gyn a few days ago & is most definitely healing them faster than anything I’ve ever tried the last few yrs but I’m not sure that’s a diagnosis in itself because I know some use for regular acne. Sorry to use someone else’s question for my own questions but I think you’ve helped me in my own question on here once. I’m still trying to diagnose myself & am desperate for a few answers. I know I’m right about having this horrible disease & the possibility of both my 2 daughters as well! . I feel I’ve even had a natural instinct my whole life not to be drawn to bread...buns..rolls. But love pasta:(

Thanks for any help

[trents]

11 minutes ago, April42 said:

Oh ok! So are you familiar with the DH rash? I think I may have both types of it. Some of mine like to reappear seems like once healed. I was able to get a script for dapsone from my gyn a few days ago & is most definitely healing them faster than anything I’ve ever tried the last few yrs but I’m not sure that’s a diagnosis in itself because I know some use for regular acne. Sorry to use someone else’s question for my own questions but I think you’ve helped me in my own question on here once. I’m still trying to diagnose myself & am desperate for a few answers. I know I’m right about having this horrible disease & the possibility of both my 2 daughters as well! . I feel I’ve even had a natural instinct my whole life not to be drawn to bread...buns..rolls. But love pasta:(

Thanks for any help

Two types of DH?

[April42]

2 minutes ago, trents said:

Two types of DH?

I think there’s the small itchy blister type & type that’s more like an angry infection picked at pimple that won’t heal & scars? Leaves a purplish scar.

[trents]

10 minutes ago, April42 said:

I think there’s the small itchy blister type & type that’s more like an angry infection picked at pimple that won’t heal & scars? Leaves a purplish scar.

I have not heard of two types of DH but that doesn't mean you are wrong. Can you link a reference to that?

[April42]

12 hours ago, trents said:

I have not heard of two types of DH but that doesn't mean you are wrong. Can you link a reference to that?

Sure:)

https://www.cedars-sinai.org/health-library/diseases-and-conditions/d/dermatitis-herpetiformis.html

What I get  on my face & back looks like this 

https://www.consultant360.com/articles/dermatitis-herpetiformis

& I get these on my fingers after shower occasionally. And my daughter used to on her toes 

https://www.drhomeo.com/homeopathic-treatment/homeopathic-medicines-for-dermatitis-herpetiformis/

We have every symptom under the sun but this is why I think my test results were unclear...

https://www.glutenfreeclub.com/diagnosing-celiac-iga-deficiency/

Any of your shared knowledge is much appreciated!

[trents]

The link to the info on the cedars-sinai web page does not describe two types of DH and the second one seems to talk about two stages of the same type, namely, the fresh outbreak with pustules and the scabbed over later stage as it starts to dry up. But it is possible you may have some other rash going on in addition to DH.

Yes, a total IGA deficiency will drive individual IGA test scores down. That is well-known. That is why every doctor should order a total IGA test whenever he/she orders other celiac antibody tests. Many neglect to do that, however. Most PCPs are pretty ignorant about gluten-related disorders and some GI docs are not much better. This forum community advocates going into appointments armed with knowledge and being prepared to be politely assertive in order to get the tests run you need.

Edited August 29, 2022 by trents

[April42]

8 hours ago, trents said:

The link to the info on the cedars-sinai web page does not describe two types of DH and the second one seems to talk about two stages of the same type, namely, the fresh outbreak with pustules and the scabbed over later stage as it starts to dry up. But it is possible you may have some other rash going on in addition to DH.

Yes, a total IGA deficiency will drive individual IGA test scores down. That is well-known. That is why every doctor should order a total IGA test whenever he/she orders other celiac antibody tests. Many neglect to do that, however. Most PCPs are pretty ignorant about gluten-related disorders and some GI docs are not much better. This forum community advocates going into appointments armed with knowledge and being prepared to be politely assertive in order to get the tests run you need.

Demodex mites. I think when my immune system was at its lowest this past year was dealing with a few extra of them. Since gluten-free have put on 2 1/2 lbs so far after not being able to get past 111 lbs this entire past year (normally around 125) & drop to 104 when I got Covid a year ago. My 15 yr old has dropped around 40 lbs the 1-2yrs. Yesterday I watched her barely touch her favorite Mexican dish & then cry because I pleaded with her to eat but as she does, she feels nauseous.  My skin was clearing on it’s on until I accidentally drank an iced coffee from chik fila & found out the hard way not to trust restaurant steak seasoning. Actually to not trust most restaurants at all.  I’m not sure my GI is very educated on celiac disease as he told my husband after my scopes & me trying to explain I haven’t eaten the required amount of gluten for testing ..that “it’s impossible to completely eliminate gluten from one’s diet” ...from my knowledge it’s life threatening & a must for a few celiacs out there carrying epi pens & long term important for the rest of us. They never even called me back for follow up so I’ve played Dr Google with my mailed results & have done a recent job i must say.

How do I know if my doc ordered a whole iga test?

[trents]

1 hour ago, April42 said:

How do I know if my doc ordered a whole iga test?

"Whole IGA test"? Don't confuse a "Total IGA" test with a "full celiac panel". Total IGA is a composite value that measures the entire IGA load, not just those IGA components associated with celiac disease. When total IGA is low it is reasonable to assume that the individual IGA components that make it up, including antibodies associated with celiac disease, will be lower than expected and may yield a false "negative" in the test results. 

A "full celiac panel" refers to ordering all antibody tests that may be associated with celiac disease, including some that are outside the IGA group. A full celiac panel would include all these tests: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/. Many physicians will only order the tTG-IGA. It is the most popular and relatively inexpensive.

To find out what tests your physician ordered you would need to either go online to look at your medical chart (if you have that resource available to you as I do where I live) or contact your doctor's office and ask that question.

[Natalie S]

Sorry guys. But can we take this conversation to a new post. I keep getting emails and am no longer part of this conversation. It is not relevant to my daughter. Thanks 

[trents]

Natalie S, you can turn off the email option in your profile settings. We allow a certain amount of deviation by new members joining a thread but your concern that the thread has gotten off it's original track is understandable. We call that "hijacking" a thread. But please do keep us posted when you have more information about your daughter's issues from the physician.