Is the Celiac diagnosis correct??

[Maureen555]

I am writing on behalf of my 69 yr old husband. In March he was diagnosed with iron deficiency anemia which came as a surprise as he had no symptoms initially. It was first discovered when we went to donate blood and he was turned down due to his hemoglobin being too low. His primary care doc then did a CBC and iron panel which showed the anemia. He did a stool smear sample which was negative and the PCP then referred him to a hematologist for further evaluation. Since he'd had a colonoscopy less than 2 years ago and wasn't having any stomach or bowel issues, there wasn't a big concern about colon cancer.

Hematologist ordered further labs including the TTG IgA and his results were 32.3 with lab normal value should be: <15 U/mL. Since we have a son with celiac, my husband was then referred to a GI doc and eventually had an EGD on May 31. We know that since he also has Hashimotos thyroid disease, we understand that he could also develop other autoimmune diseases like celiac.

The hematologist also ordered genetic testing for cancer as my husband has 3 younger sisters who've all had breast cancer and two of them subsequently died of pancreatic cancer in their 50's. Third sister also had uterine cancer as well as breast cancer but she is now cancer free. An extensive genetic cancer panel was done on him and there was no mutations for cancer. However the same negative results for genetic tests for cancers happened with his three sisters so it still remains a puzzle as to why there is so much cancer in his family (paternal grandmother and aunt also had multiple cancers, including pancreatic cancer).

He also had IV iron infusions that had to be done in a series of three times, once a week June 4, 11, 18. We were told it can take at least a month to see positive effects from that.

After the EGD, the GI doctor's initial findings were:

Heaped up tissue in the antrum compatible with ectopic pancreatic tissue

Scalloping in the duodenal bulb compatible with Celiac Disease

Esophageal ring

She indicated that the ectopic pancreatic tissue and esophageal ring were not anything to be concerned about.

She also then ordered additional celiac tests to be done and those results were:

 

CELIAC DISEASE COMPREHENSIVE PANEL INTERPRETATION

Consistent with celiac disease, but not confirmed by EMA IFA.

 

TISSUE TRANSGLUTAMINASE AB, IGA U/mL 32.0 H

<15.0 Antibody not detected

> or = 15.0 Antibody detected

 

IMMUNOGLOBULIN A 229

Reference Range: 70-320 mg/dL

 

 

ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER

NEGATIVE

 

GLUTAMIC ACID DECARBOXYLASE 65 AB <5

Reference Range: <5 IU/mL

 

Here's what the biopsy/pathology report said:

Final Diagnosis:

A. Duodenum

 

-Partially denuded fragments of duodenal mucosa with mild increase in

intraepithelial lymphocytes and active inflammation.

-No evidence of celiac disease.

Interpretation Increased lymphocytes in duodenum. Query latent celiac.

 

When we received all of this info, we questioned the GI doc about the pathology report and celiac labs and she replied:

"I did see the labs. Thanks! So it's interesting that the pathologist commented no evidence of celiac disease but then mentioned lymphocytes in the tissue and that celiac was still in the differential. Your endoscopic appearance and labs ARE consistent with celiac. That is my diagnosis when looking at the big picture."

 

So.....I am looking to members of this group to see what you think. Does this info line up with celiac? We honestly expected that the biopsy would be very clear in showing celiac since that's what she believed she saw. Is it unusual for the pathology report to be so different from the doctor's opinion? I looked up "latent celiac" which the biopsy mentioned and read:

The diagnosis of latent celiac disease is made when blood tests are positive for the condition but a visual examination of your intestines reveals no damage to the villi that line the organ. 

Since March, my husband's symptoms have become so much worse – much more fatigue and shortness of breath. We understand that anemia can be the cause of that and even though he began a gluten free diet two weeks ago (after the doctor decided he has celiac) we know it can take a while to see positive results. He also began having stomach issues/diarrhea which is new. With his family history of cancer, it's worrisome that maybe something else is going on even if he does have celiac. Not sure if we should be pushing for further testing like what had been mentioned prior to the EGD, such as a barium swallow test and/or pill cam EGD. Maybe we just need to stay the course now and see how things go??

Thank you all so much for your thoughts, we value your opinions!

 

 

 

 

 

 

 

[trents]

"-Partially denuded fragments of duodenal mucosa with mild increase in intraepithelial lymphocytes and active inflammation."

This sure sounds like celiac disease mucosal damage to me!

[trents]

There is a 4x increase in lymphoma of the small bowel for celiacs compared to the general population. That sounds scary but the incidence is still small. The other family members you mentioned had other kinds of cancer.

[Paula McVicker]

Hi Maureen & Hubby

I'm not going to pretend that I know what all those tests even mean. Whether you're a Coeliac or not they are extremely confusing & useless to any lay person.

Especially given the cancer history of your family this must be so overwhelming for you all. I'm so sorry you have to go through this.

However, on a less technical note, I would like to give my thoughts on how I've dealt with similar problems over the years.

Stop relying on all the medical jargon to help solve the mystery! 

I was advised years ago to do just that. I'm not saying ignore the medical side of things, these are important, but, try this, perhaps.

Take a big breather, sit back and listen to your body. I mean really listen. Don't just say I've pain, describe it, it's position on your body, how it makes you feel. Ask questions off yourself -eg- is the pain from being bloated or something else. Get answers to Your questions as best you can & yes do Goggle them to be better informed. But don't jump on any bandwagon of 'cure' make sure that it can be beneficial for you. And Yes it will be all experimental at the start but you will soon be able to put together a care package that suits your needs.

Get All of your family members to participate. They could be researching or asking questions on your behalf, alongside you. That's your winning team!

This may take a while to get comfortable with. Take your time - Rome wasn't built in a day kinda thing.

Start by listing all your symptoms. This is where family etc are useful because they'll remember things that you may have forgotten.  Keep a record of everything. Keep a diary that everyone can contribute to whenever they recall a symptom or to record any research findings. Have regular family meetings & discussions about everything you record. But more importantly Discuss your & your family's emotions & feelings regarding everything.

Decide which symptoms are appearing the most frequent. Rate their severity & impact on your life, then going from highest address each one, either through your own research , or personal experience of the symptoms.  Some or many symptoms may overlap with each other, which can tell you a lot more about them.

As a Coeliac I put this into effect for myself, so I'll recall how I've managed to address a major life impacting symptom & possibly you could adapt similar in your lives.

So doing the above I found that the vomit, diarrhea & gas where a major impediment in my life.  I re-evaluated my food, all was fine. No cross contamination etc going on there. Then I checked all products that I used in my bathroom, kitchen etc & I found that some products IN MY TOILETRIES & Makeup, where not as gluten friendly as I was led to believe! So I changed my products & this helped.

However it is not just about eradicating gluten, but also how you manage your symptoms after you've been gluntened and these can be horrendous.

The vomit, diarrhea, pain & smell, that ensues causes you to retreat from everyone around you, & leads you to self manage yourself. Which is not always ideal, but there are other ways of addressing these. Not with OTC medicines but a more natural way. 

The following was an explanation I was given years ago to help me understand that by using appropriate natural antidotes I could help alleviate my symptoms which sped up my recovery rate.

For example, in nature you will always find dandelions close to stinging plants such as nettles. This is because they are a natural antidote to the sting!

So when you've been gluntened you lose your appetite yet you're still hungry. You want food but feel you must "starve" to help flush the gluten from your system. This is wrong & dangerous & yes I followed the same method for years myself.

Then I was told that if I ate Sticky, Plain boiled rice I could substantially help myself & my body recover naturally.

Sticky rice yeah I know 😂 

But it works, for me anyway.

The basic theory behind it is that the sticky rice, whilst passing through your digestion, adheres to all the mucus etc in your gut & helps draw it out. Therefore helping to alleviate hunger & dissipate the wind & bloating. Which in turn helps you be more comfortable. It is not a cure but a natural digestive aid, not just for gluten flares but for most upset stomach problems, such as gastric flu.

When I get gluntened or even if I have an upset stomach I use sticky rice to help. It is not a cure all for Coeliac but a natural way to alleviate some symptoms & put less stress on your body & yourself, which is important.

So what does this entail & for how long??

It's NOT recommended to do this for more than 48 hours & you must stick to water & rice only for at least the first 24 hours.

My recipe for sticky rice is:

1 cup long grain rice

1 cup of boiling water

Place in a pan & simmer until cooked & sticky. 

I find this amount enough to last me 2 days.

You can add salt if you prefer, but definitely nothing else.

Please note I would not recommend doing this for young children without medical advice. 

So what you do for the first 24 hours is eat away at the rice to alleviate the hunger, & sip water in between. Small amounts & often are best. Don't Go more than 2 hours without having at least a spoonful of rice. Yes just a spoonful Do not Eat it all In one session it's counterproductive.

By the next day your symptoms should feel improved. Which is great because now you can feel more in control.

The next day you may want to include some chicken/protein with your rice. Again no sauces, plain & bland is the way to go for the next 24 hours. Drink only water, & nibble away at the rice whenever you feel the need. Again little & often is best.

If I've had a particularly bad flare up I will introduce the BRAT diet for a few days to help me along.

(https://www.healthline.com/health/brat-diet) information on a BRAT diet - follow conservatively & again only if you feel it would be beneficial.

Then you gradually reintroduce other foods. I find it especially helpful if I start my meals with a spoonful of the sticky rice before anything. Just until I feel my gut can handle food.

Reintroduce other foods / liquids & assess how they make you feel. Make a note in your journal to address any findings this reintroduction has raised once you are feeling much stronger.

I see you've mentioned Vitamin B12 & iron levels are low. Could this be due to a lack of them in your overall diet? Review your diet. Learn the importance of vitamins etc for your body, what foods are rich in these essential nutrients & incorporate as much as these in your overall eating plan. It'll go a long way to improving your health & energy.

Plus with all that knowledge you'll be a genius at Pub Quizzes etc 😂 (everything has an upside you just need to find it). My family etc have really enjoyed this aspect of the learning curve 😉 

Good grief this is long winded but I hope it at least gives you a starting point & something to think about.

Good luck & if you need any more clarity or help let me know.

I'll leave on this note which may sound counter productive. With Coeliac & any condition you will always be learning & evolving. Your body's needs will change over time, & you need to adapt.

Even now having been a Coeliac for 60 years I'm still doing that, so don't get disheartened. What worked for you before may not suit for all your flares so you're going to have to go back to the starting blocks of:

Listen to your body & assess its needs at any given time. It'll keep you right in the long term.

Good luck on your journey 

[RMJ]

I think you have a good hematologist and a good gastroenterologist!

With positive antibody results, positive visual results of the endoscopy (scalloping), some microscopic pathology results (increased epithelial lymphocytes), another autoimmune disease (Hashimoto’s) and a first degree relative (son) with celiac disease, it is VERY likely that your husband does indeed have it too. Sometimes the damage in celiac disease is patchy and the biopsy can miss it.

It takes some weeks after iron infusions for a body to grow new red blood cells.  It also takes time for the gluten free diet to have an effect.  Perhaps give it a few months to see if red blood cell count goes up and antibody levels go down?  

New stomach issues could be due to a change in diet, especially if your husband is eating a lot of processed gluten free foods. Sometimes the additives can bother people.  Whole foods, meat, veggies, rice - foods like that might be better for now.

[Scott Adams]

The biopsy/pathology report indicates the following:

Duodenum Findings:

• Partially Denuded Fragments: This means that some areas of the duodenal lining are eroded or stripped away.
• Mild Increase in Intraepithelial Lymphocytes: There is a slight increase in the number of lymphocytes (a type of white blood cell) within the epithelial layer of the duodenum.
• Active Inflammation: There are signs of ongoing inflammation in the duodenal tissue.
• No Evidence of Celiac Disease: Despite the inflammation and increased lymphocytes, there is no definitive evidence to diagnose celiac disease based on this biopsy.

Interpretation

The increased lymphocytes in the duodenum and active inflammation suggest an abnormal immune response. The term "query latent celiac" means that while there is no clear evidence of celiac disease at this time, the findings raise the possibility of latent (or potential) celiac disease. This means that the patient might have celiac disease that is not fully manifesting yet or might be at risk of developing it in the future.

To me, the fact that his blood test is very positive, his son has it, and he has signs of villi damage in progress, including low iron levels--this all ads up to celiac disease.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

[Maureen555]

Hello All,

Wow, I just can't thank you all enough for your advice and wisdom. This is exactly what both me and my husband needed at this time! So we definitely feel better about "staying the course" and being patient with recovery.  Since our son was diagnosed about 8 years ago, we're familiar with the gluten-free lifestyle so that helps a lot. I love to bake and cook wholesome foods and have acquired quite a library of gluten-free cookbooks, especially breads.  But up til now, the focus was mainly on my son and the rest of us didn't have to be quite as concerned about gluten-free. I am so thankful that my husband is on board with this new way of eating for him and willing to go completely gluten-free. I know that's not always the case with everyone.

Years ago I pretty much dismissed many of the store bought gluten-free products since as was mentioned here, a lot of them are overly processed with not-so-healthy ingredients. So like I said, I feel like we're on the right track now and I feel ever so much better especially since all of you have shared such great info.  ☺️

[trents]

It was a pleasure to be able to help you, Maureen!

You will be aware of much of this already from working with your son's celiac diagnosis but there may be some areas you hadn't thought about such as gluten in meds and oral hygiene products, kitchen appliances and surfaces, etc.: