Need Advice About Conflicting Test Results Please...

[BellaBella]

Hi all,

Just looking for some info on my conflicting test results.... Have had Celiac symptoms for years. Was tested last winter and I got some conflicting results. In a nutshell, all my "labs" (bloodwork & biopsies) were negative, but.....my gastro noted that during my endoscopy she observed flattened villi.

I know there are lots of false negatives and I know the only way to know if a gluten-free diet is for me is to try it, but what I really want to know is: is there anything besides Celiac (or tropical sprue) that can cause villous atrophy? I just wonder if there is something else at play here, or if I just probably got a false negative test.

At the beginning of the year I went gluten-free for about 6 months. I can't guarantee that I was 100% gluten-free but I did the best I could. Unfortunately, I didn't feel much better. My energy didn't increase and there was no "a-ha" moment like some of you have had. Plus, the gluten-free diet was just really tough for me for a lot of reasons (that I won't get into).

That said, I've been back on a gluten-full diet for several months now and I'm feeling terrible. Besides the fatigue and other whole body symptoms my tummy/intestines/bowels just hurt. All.The.Time. I feel like I could handle the other stuff but the constant tummy pain is becoming unbearable and I'm currently working my way thru a Costco-sized bottle of Immodium. (Sorry, TMI.)

Unfortunately (right or wrong) I feel that going gluten free for me would be so much easier if I had a definitive diagnosis.

Thoughts? Suggestions? Advice? Thanks in advance...

[kareng]

Hopefully they are checking for these things?

Open Original Shared Link

What else can cause damage to the small intestine other than celiac disease?

There are many causes for villus atrophy, the most common being immune deficiencies, food allergies and Giardia infections.

In addition, Crohn’s disease is known to be often associated with low positive tTG and the changes in the duodenal biopsies can indeed be similar.

[scap]

My father had celiac disease. I am 52 yrs. old and was having some gastro problems some years ago, mentioned that to the gastro doctor when I went for my 5 year check up for my colonoscopy and she suggested doing an endoscopy. The results of the endoscopy were "inconconclusive" so I continued my regular diet. About five years ago, I decided to go gluten free to see if it would help my continued gastro issues and it did. I felt a million times better!

So I've been gluten-free for about 5 years but have developed gastro issues once again. My new gastroenterologist did a Promethius, Comprehensive Celiac Evaluation. The nurse called to say my results were "negative." I just got the copy of my lab results in the mail today, and they show that "serological markers for celiac not detected" and that "celiac disease is unlikely if patient is on a gluten-containing diet and is IgA sufficient." I had asked the doctor before the test if the results would be valid since I have been gluten-free for 5 years and he said "yes." Obviously he was wrong according to the lab report.

Also, the report shows that a celiac gene was detected - DQ2.5 (HLA DQA1*05:DQB1*0201) which is a category 4, meaning my risk is 10X, High.

My doctor thinks I have IBS and not celiac and that the reason I felt better after going gluten-free five years ago was because a gluten-free diet "is more healthy." I am just wondering what to make of these test results. My "gut" feeling (pun intended) tells me that I am indeed either gluten intolerant or celiac and that the diet makes sense to continue, and that my lab results are meaningless because I have been gluten-free for so long. But I am at a loss to explain why my gastro symptoms have come back in full force I don't think I have any gluten sneaking into my diet but I did accidentally eat some gluten containing food just a few days before the sudden onset of these symptoms. Would it be normal to have a reaction for 3 months after accidental gluten consumption?

[SMDBill]

I can't really answer many of your questions, but I will try to based only on my situation...hopefully it helps. I gave my gastro all my symptoms and 6 pages of how I felt prior and all the changes I felt once I was gluten-free. He was certain without testing me I had celiac and that caused all my issues. However, during the endoscopy he found I have erosive gastritis (eroding stomach lining) and duodenitis (similar but it's in the duodenum, which hooks stomach to small intestine). When he probed me following the procedure to see if i was a heavy drinker, drug abuser, etc., he asked about NSAID pain relievers. I lived on them for years due to headaches every single day, many of them migraines. THAT was the key. Celiac caused the headaches, I responded with medication and my stomach and duodenum paid the price. So, what he found was that some of my discomfort was my body responding to too much medicine. I fixed the root cause by going gluten-free, but the punishment my stomach took was more than just gluten-free could fix. So, next week I believe he'll prescribe 2 antibiotics, a PPI (like Prilosec OTC) plus all the celiac treatments I may need (B-12, D3, bone growth meds, etc).

I didn't mean to get so off topic with all that, but my point was that you may also have an underlying symptom that is related to celiac that just going gluten-free could not fix. My situation would not improve with just gluten-free because that damage also came with an infection (H pylori). I have to eradicate all that to heal my stomach and intestines along with the celiac damage that needs to heal. It's worth talking to your gastro and asking to be tested more thoroughly for another related or possibly unrelated cause. We can guess, sometimes accurately, but gastros can do awesome work in short time to root out the real trouble.

Edit: Mostly gluten-free doesn't really help if you are celiac. The damage is done whether you eat a crumb or a pizza. Until you are truly gluten-free you can't know the feeling of change your body can go through with the new diet and ridding your body of what is literally a poison to it. You'll be so thankful to yourself if you can manage to do it and stick to it. I felt great in 2 days while others took weeks, but the end result is the same for many...relief.

[GFinDC]

Welcome Scap,

You are correct, the celiac antibody tests are useless if you have been gluten-free for that long. The antibodies start to drop of when gluten is removed. How long that takes is not fixed in stone, but the Chicago Celiac Center suggests two months.

It is possible to develop new food intolerances also. You may have become intolerant to another food or food group. Soy, corn, eggs, oats, nuts, seafood, nightshades, and more are all possibilties.

[guest134]

Here are some of the many causes of villi damage:

Coeliac Disease

Cows Milk Protein Intolerance

Soy Protein Intolerance

refractory Sprue

collagenous Sprue

Immunodefiency Synodromes

Mediterranean lymphoma

intestinal ulceration

Gastroenteritis

Intractable Diarrhoea of Infancy

Protein Calorie Malnutrition

Kwashiorkor

Tropical Sprue

Parasitic Disease:

Giardiasis

Strongyloidiasis

Coccidiosis

Intestinal Capillariasis

Hookworm Disease

Eosinophilic Gastroenteritis

Contaminated bowel Syndrome

Drug and Radiation Damage

As you can see, diagnosing an abdomen issue is no walk in the park. Have you had your thyroid checked?

[gatita]

This whole thread is an eye-opener to me. I always thought that villi damage meant celiac no matter what, except for temporary flattening due to giardia or tropical sprue.

BellaBella, I hope you get some kind of help soon. Maybe you should get the gene test for celiac?

[GottaSki]

Hi all,

Just looking for some info on my conflicting test results.... Have had Celiac symptoms for years. Was tested last winter and I got some conflicting results. In a nutshell, all my "labs" (bloodwork & biopsies) were negative, but.....my gastro noted that during my endoscopy she observed flattened villi.

I know there are lots of false negatives and I know the only way to know if a gluten-free diet is for me is to try it, but what I really want to know is: is there anything besides Celiac (or tropical sprue) that can cause villous atrophy? I just wonder if there is something else at play here, or if I just probably got a false negative test.

At the beginning of the year I went gluten-free for about 6 months. I can't guarantee that I was 100% gluten-free but I did the best I could. Unfortunately, I didn't feel much better. My energy didn't increase and there was no "a-ha" moment like some of you have had. Plus, the gluten-free diet was just really tough for me for a lot of reasons (that I won't get into).

That said, I've been back on a gluten-full diet for several months now and I'm feeling terrible. Besides the fatigue and other whole body symptoms my tummy/intestines/bowels just hurt. All.The.Time. I feel like I could handle the other stuff but the constant tummy pain is becoming unbearable and I'm currently working my way thru a Costco-sized bottle of Immodium. (Sorry, TMI.)

Unfortunately (right or wrong) I feel that going gluten free for me would be so much easier if I had a definitive diagnosis.

Thoughts? Suggestions? Advice? Thanks in advance...

Hello Bella!

Flattened villi can take quite a long while to heal - the damage likely took many years to develop and can take time to heal. I believe the most important statement you made is when you added gluten back in you felt much worse - this is telling. Some of us take months and even years to heal once gluten is removed - it can be a very slow dance of one step forward, a couple back and then forward again.

As for a more definitive diagnosis - have your doctor order a full celiac panel along with nutrient testing while you are still eating gluten. Once the blood is drawn - remove it ALL. If you are not sure you gave it your best effort, start again with conviction - your health is worth all energies poured into going gluten-free and just a teeny-tiny bit here or there is plenty to prevent progress. This is not a diet - it is a way of life - period. I always giggle when I see Yoda in my mind's eye - saying "Do or do not - there is no try". Ya, it's kinda creepy too...but does help to laugh whenever possible.

Give your body the time it needs to heal and schedule a follow up endoscopy once you have been gluten-free for a year or more.

Also, if you don't have them already request written or electronic copies of all blood and pathology reports. It is beneficial to know exactly which tests were run and the language used in the endo/biopsy reports often help understand exactly what was seen, found and taken from your small intestine.

Get ready, get set, than go heal

[BellaBella]

Here are some of the many causes of villi damage:

Coeliac Disease

Cows Milk Protein Intolerance

Soy Protein Intolerance

refractory Sprue

collagenous Sprue

Immunodefiency Synodromes

Mediterranean lymphoma

intestinal ulceration

Gastroenteritis

Intractable Diarrhoea of Infancy

Protein Calorie Malnutrition

Kwashiorkor

Tropical Sprue

Parasitic Disease:

Giardiasis

Strongyloidiasis

Coccidiosis

Intestinal Capillariasis

Hookworm Disease

Eosinophilic Gastroenteritis

Contaminated bowel Syndrome

Drug and Radiation Damage

As you can see, diagnosing an abdomen issue is no walk in the park. Have you had your thyroid checked?

Hi ToWorry....interesting information here! That's more information than I have been able to find previously. Oddly enough, my 7 year old son has Eosinophilic Esophagitis so I'm pretty well-versed on the eosinophilic stuff, however, I didn't realize that Eosinophilic Gastroenteritis caused villous atrophy! Wow!

And to answer your question, yes....my thyroid is being closely monitored by my doctor. I am diagnosed Hashimotos Thyroiditis (which I know has a strong correlation with Celiac). Hashimotos is when your body attacks your own thyroid and apparently the gluten molecule strongly resembles the thyroid tissue so your body attacks the thyroid when trying to attack the gluten. (Totally forgot to mention this in my first post!)

I have ordered the home celiac (CeliacSure) test from GlutenPro...(anyone have any experience with this?) I'm very curious to see what the results are. I am hoping for a positive test.....just because then at least I would have some confirmation of my problem. I am very frustrated at trying to solve an unidentified problem.....is it celiac? is it my gallbladder? am I allergic to dairy? is it something else altogether that I am missing? It's hard to fix something when you don't know what's broken. I really wish that when I had gone gluten free earlier this year that I felt better - like most of you report. Then I would feel like I've hit the nail on the head. Maybe I just didn't give it enough time. Really anything is possible at this time but I'm tired of feeling lousy. I have another appt with my gastro on Tuesday, hopefully she'll be able to help (although she was very skeptical of Celiac in the first place...until she saw the villous atrophy).

[BellaBella]

This whole thread is an eye-opener to me. I always thought that villi damage meant celiac no matter what, except for temporary flattening due to giardia or tropical sprue.

BellaBella, I hope you get some kind of help soon. Maybe you should get the gene test for celiac?

Good suggestion gatita, I might just have to bite the bullet if I want the answers I am seeking.

[BellaBella]

Hopefully they are checking for these things?

Open Original Shared Link

What else can cause damage to the small intestine other than celiac disease?

There are many causes for villus atrophy, the most common being immune deficiencies, food allergies and Giardia infections.

In addition, Crohn’s disease is known to be often associated with low positive tTG and the changes in the duodenal biopsies can indeed be similar.

I will look into these...thanks kareng!