Biopsy shows no, blood tests and gluten free say yes

[linko]

Hi everyone, 

I'm seeing a GI doctor initially for diagnosing celiacs. The biopsy came up negative, but I'm not certain of the results and questioning the doctors (long story of why). I'm going back to ask them questions and what else, if not celiacs, could be the issue. 
Does anyone have any suggestions, thoughts, things to ask the doctor, etc?  Is there something else to suspect? Was this diagnostic to be questioned? etc. 

Quick summary:
- Had celiacs blood panel while on normal diet, including gluten. Results were suspected celiacs and referred to GI doc. 

tTg-IgA: 247.6
Immunoglobulin A: 500
EMA-IgA: negative

- Went on gluten free diet for 2 months while waiting on referral to GI doc. 
- Went back on gluten for 1 month prior to bioposy.  Celiacs blood panel taken at time of biopsy.  tTg-IgA dropped significantly. Immunoglobulin A still stayed high. 

tTg-IgA:  47.2
Immunoglobulin A: 475
EMA-IgA: negative

Biopsy results said no celiacs and no signs of ever having celiacs. No legions and everything normal looking. 

Symptoms before everything:    Bloating, gassy, fatigue, abdominal uneasiness/unsettled, occasional back and forth between constipation and loose stools, severe brain fog, migraines, anxiety

Symptoms after gluten free diet:  Everything above has gone away except abdominal uneasiness in the middle of the night, which I'm tracking.

Tested going on gluten for one day, symptoms included:  really gassy, a lot of abdominal uneasiness, and high anxiety from the discomfort.   I might try again soon. 

Other things to note in case they matter:
- I have had psoriasis my entire life. I have found info linking psoriais to high IgA and looking like celiacs, but I'm not certain.  
- History of GI issues throughout life, never diagnosed of cause.
- Family history of colon cancer, GI issues, and auto-immune diseases
 

[trents]

Welcome to the forum, linko!

It's hard to tell much since you did not include the ranges for positive vs. negative for each test. There is no standard for these things. Each lab develops there own test parameters. Please post back and include that additional piece of information.

One month back on gluten is not sufficient to return valid blood antibody test results but it should have been good enough for the biopsy as long as you were eating the gluten equivalent of 2 pieces of wheat bread daily.

[Russ H]

As trents says,without knowing the reference range, it is not possible to say. Typically above 15 U/mol is positive. If so in your case, the initial result would be almost unequivocally coeliac disease, with the level falling during 2 month gluten free diet. It does sound like coeliac disease, especially considering your symptoms and family history.

[linko]

@trents, Thank you for the feedback, I'm including more info requested below. 
For the biopsy. I was eating enough gluten daily for that month.  

Before (on gluten - entire life):
tTg-IgA:  247.6 U/mL  (standard range:  <15.0 Antibody not detected, > or = 15.0 Antibody detected)
Immunoglobulin A:  500 mg/dL  (standard range: 47 - 310 mg/dL)
EMA-IgA: negative

After (gluten free 2 months, then on gluten 1 month):
tTg-IgA:  47.2 U/mL  (standard range: <15.0 Antibody not detected, > or = 15.0 Antibody detected)
Immunoglobulin A:  475 mg/dL  (standard range: 47 - 310 mg/dL)
EMA-IgA: negative

[Russ H]

As you were over 16x the reference range in the first test, that alone would diagnose you in the UK (10x or over is the guideline). Typically, at least 6 weeks eating gluten is requested for the serology to be accurate. You still have raised levels after 2 months off, 1 month on. It does look like coeliac disease.

EMA just detects tTG but with a lower sensitivity. I don't know why they still use it as it is old, crude and doesn't provide additional information.

[trents]

Yes, it looks like celiac disease to me with that high tTG-IGA and GI symptoms, family history of autoimmune disorders as well as improvement in symptoms with gluten free diet.

[Wheatwacked]

15 hours ago, linko said:

 Bloating, gassy, fatigue, abdominal uneasiness/unsettled, occasional back and forth between constipation and loose stools, severe brain fog, migraines, anxiety

Try supplementing Choline 500 mg a day, or phoshatidyl choline for digestion issues and brain fog.  Deficient choline is ofter mistaken for gall bladder disease because most of the salts in bile is choline.  May help brain fog because of low acetylcholine.  Low vitamin D can cause anxiety.

Could we be overlooking a potential choline crisis in the United Kingdom?

Is Vitamin D Important in Anxiety or Depression? What Is the Truth?   "Low vitamin D levels are associated with increased symptoms of depression and anxiety. For this reason, vitamin D screening should be performed in the prevention and treatment planning of these mood disorders."

[linko]

Thank you everyone for the replies, they have been helpful. 

I'm curious about why the biopsy didn't pick anything up if I happen to have celiacs?  He said that there were no signs of celiacs or early signs of it, as well as found nothing else (listed many things) and everything was normal.  

[trents]

10 minutes ago, linko said:

Thank you everyone for the replies, they have been helpful. 

I'm curious about why the biopsy didn't pick anything up if I happen to have celiacs?  He said that there were no signs of celiacs or early signs of it, as well as found nothing else (listed many things) and everything was normal.  

There are several possibilities.

1. You transitioned rather recently from NCGS to Celiac Disease and there had not been enough time for damage to be done to the small bowel villous lining.

2. The damage to the villous lining was patch and the samples were taken represented areas of the small bowel lining that were still healthy. This is not uncommon and it is the reason we recommend those getting a biopsy to check with the GI doc about what his/her customary practice is in this regard. We recommend that at least four samples be taken from both the duodenum and the duodenum bulb.

3. Your autoimmune response is atypical. Consider that a small percentage of celiacs who are diagnosed with dermatitis herpetiformis (DH) have antibodies that attack only the skin and not the small bowel at all. However, most with DH also have villous atrophy.

[knitty kitty]

@linko,

The small intestine can be twenty feet long, way past the reach of a scope.  A camera endoscopy may be another option you could look into.  

A genetic test for Celiac genes would be another option.  

[BluegrassCeliac]

On 8/15/2023 at 7:10 PM, linko said:

Hi everyone, 

I'm seeing a GI doctor initially for diagnosing celiacs. The biopsy came up negative, but I'm not certain of the results and questioning the doctors (long story of why). I'm going back to ask them questions and what else, if not celiacs, could be the issue. 
Does anyone have any suggestions, thoughts, things to ask the doctor, etc?  Is there something else to suspect? Was this diagnostic to be questioned? etc. 

Quick summary:
- Had celiacs blood panel while on normal diet, including gluten. Results were suspected celiacs and referred to GI doc. 

tTg-IgA: 247.6
Immunoglobulin A: 500
EMA-IgA: negative

- Went on gluten free diet for 2 months while waiting on referral to GI doc. 
- Went back on gluten for 1 month prior to bioposy.  Celiacs blood panel taken at time of biopsy.  tTg-IgA dropped significantly. Immunoglobulin A still stayed high. 

tTg-IgA:  47.2
Immunoglobulin A: 475
EMA-IgA: negative

Biopsy results said no celiacs and no signs of ever having celiacs. No legions and everything normal looking. 

Symptoms before everything:    Bloating, gassy, fatigue, abdominal uneasiness/unsettled, occasional back and forth between constipation and loose stools, severe brain fog, migraines, anxiety

Symptoms after gluten free diet:  Everything above has gone away except abdominal uneasiness in the middle of the night, which I'm tracking.

Tested going on gluten for one day, symptoms included:  really gassy, a lot of abdominal uneasiness, and high anxiety from the discomfort.   I might try again soon. 

Other things to note in case they matter:
- I have had psoriasis my entire life. I have found info linking psoriais to high IgA and looking like celiacs, but I'm not certain.  
- History of GI issues throughout life, never diagnosed of cause.
- Family history of colon cancer, GI issues, and auto-immune diseases
 

Something similar happened to me: If the blood tests say you have it, and you respond well to gluten-free diet, then you probably have celiac disease. If it walks like a duck... It's my understanding that the blood tests are more accurate than the biopsy anyway, but you're mileage may vary. The biopsy is often wrong. In many European countries, that's all that's needed for a diagnosis anyway. And my gut was sore for months after going gluten free (from all the damage), but it finally healed. I felt better every day, so I knew I was on the right track. Good luck. 

[trents]

I don't think it's accurate to say that the blood tests are more reliable than the biopsy. At this point in time at least, the biopsy is still considered the gold standard test, though there are some instances where it does miss the mark. In the UK and other countries, many docs will declare a celiac diagnosis without a biopsy but the tTG-IGA must be 10x normal or higher for this to happen.

[linko]

Thank you everyone, this has been very helpful discussion and left me with some questions to bring to the doctor when I see them again soon.  And confirmed some info I had read about. I'll try to update if I get anymore useful information from the doctor or anywhere else. 

[Jeff Platt]

On 8/15/2023 at 5:10 PM, linko said:

Hi everyone, 

I'm seeing a GI doctor initially for diagnosing celiacs. The biopsy came up negative, but I'm not certain of the results and questioning the doctors (long story of why). I'm going back to ask them questions and what else, if not celiacs, could be the issue. 
Does anyone have any suggestions, thoughts, things to ask the doctor, etc?  Is there something else to suspect? Was this diagnostic to be questioned? etc. 

Quick summary:
- Had celiacs blood panel while on normal diet, including gluten. Results were suspected celiacs and referred to GI doc. 

tTg-IgA: 247.6
Immunoglobulin A: 500
EMA-IgA: negative

- Went on gluten free diet for 2 months while waiting on referral to GI doc. 
- Went back on gluten for 1 month prior to bioposy.  Celiacs blood panel taken at time of biopsy.  tTg-IgA dropped significantly. Immunoglobulin A still stayed high. 

tTg-IgA:  47.2
Immunoglobulin A: 475
EMA-IgA: negative

Biopsy results said no celiacs and no signs of ever having celiacs. No legions and everything normal looking. 

Symptoms before everything:    Bloating, gassy, fatigue, abdominal uneasiness/unsettled, occasional back and forth between constipation and loose stools, severe brain fog, migraines, anxiety

Symptoms after gluten free diet:  Everything above has gone away except abdominal uneasiness in the middle of the night, which I'm tracking.

Tested going on gluten for one day, symptoms included:  really gassy, a lot of abdominal uneasiness, and high anxiety from the discomfort.   I might try again soon. 

Other things to note in case they matter:
- I have had psoriasis my entire life. I have found info linking psoriais to high IgA and looking like celiacs, but I'm not certain.  
- History of GI issues throughout life, never diagnosed of cause.
- Family history of colon cancer, GI issues, and auto-immune diseases
 

Do you have dairy issues?  Some of the symptoms can come from both or either of these two, dairy and from gluten sensitivity. 
Respectfully

Jeff

[BluegrassCeliac]

I can't tell if you're asking me whether I have dairy issues or everyone, but in my case no dairy issues. My blood test showed normal IgA levels, but my IgG levels were so high they were almost off the scale. A gluten-free diet cured me. I was horribly sick and lost about 75 lbs. It took over a year to fully recover. I could barely walk. I would suggest that you try a gluten-free diet and see if it helps. What have you got to lose?

[linko]

Hi everyone,

Updating again for anyone following this.  

I saw the doctor. She said that my results were unusual with the normal biopsy, but that judging by the blood tests of being so high for the first test, then even my 2nd test still being above the normal range, and my symptoms being on and off gluten, it is very likely I have celiacs.  The gluten is indeed effecting me and shows in blood tests. She said if I wanted further confirmation, I could try for genetic testing to give another indicator.  She also said she doesn't suspect anything else could be causing me issues, that it's highly likely that it's gluten is the culprit, so she didn't recommend anything else unless I end up having any changes that would clue into anything else and to monitor with help from my primary doctor. So I've made an appointment with my primary doctor to discuss a few things she mentioned, like the genetic testing. 

Also, recently I've tried gluten tests on multiple occasions. I had mild to severe symptoms for each. I also found that it seems I have more of a delayed reaction.  For instance, one time I had high abdominal pain 1.5 days later and then discomfort for another day. I mentioned this to the doctor and she said yes, some have delayed reaction to the inflammation. My tests did confirm I had at least some symptoms every time I tested.

Also, she said the doctor who performed the biopsy is extremely well regarded in the field and their practice, he's the one they go to for abnormal issues. I also saw in reviews online confirming that, that he's the one to go to and the best in the area, highly referred to for abnormal issues. So at least that might give the biopsy result more weight of being accurate. 

I might try doing more gluten tests to see how sensitive I am to it, as well as try elimination of dairy and sugars just because why not.

I'll try to update here again if anything changes. 

Thank you everyone again, it's very helpful to have multiple opinions and a discussion about this, it helped a lot going into the doctor with very specific questions and helped me to feel more confident about what was happening. 

[Russ H]

1 hour ago, linko said:

Also, recently I've tried gluten tests on multiple occasions. I had mild to severe symptoms for each. I also found that it seems I have more of a delayed reaction.  For instance, one time I had high abdominal pain 1.5 days later and then discomfort for another day. I mentioned this to the doctor and she said yes, some have delayed reaction to the inflammation.

That is why it took so many years for the cause of coeliac disease to be elucidated - most people don't react immediately to gluten. If you have a food allergy, you know immediately what you are reacting to. With coeliac disease it is a very delayed and drawn out immune response.

[trents]

6 hours ago, Russ H said:

That is why it took so many years for the cause of coeliac disease to be elucidated - most people don't react immediately to gluten. If you have a food allergy, you know immediately what you are reacting to. With coeliac disease it is a very delayed and drawn out immune response.

Many people do not have much of a delayed response. If I get a good dose of gluten I get violently ill with intense cramping, repeated emesis followed by diarrhea all starting within two hours of consumption.

[Mendylynn]

On 8/15/2023 at 4:10 PM, linko said:

Hi everyone, 

I'm seeing a GI doctor initially for diagnosing celiacs. The biopsy came up negative, but I'm not certain of the results and questioning the doctors (long story of why). I'm going back to ask them questions and what else, if not celiacs, could be the issue. 
Does anyone have any suggestions, thoughts, things to ask the doctor, etc?  Is there something else to suspect? Was this diagnostic to be questioned? etc. 

Quick summary:
- Had celiacs blood panel while on normal diet, including gluten. Results were suspected celiacs and referred to GI doc. 

tTg-IgA: 247.6
Immunoglobulin A: 500
EMA-IgA: negative

- Went on gluten free diet for 2 months while waiting on referral to GI doc. 
- Went back on gluten for 1 month prior to bioposy.  Celiacs blood panel taken at time of biopsy.  tTg-IgA dropped significantly. Immunoglobulin A still stayed high. 

tTg-IgA:  47.2
Immunoglobulin A: 475
EMA-IgA: negative

Biopsy results said no celiacs and no signs of ever having celiacs. No legions and everything normal looking. 

Symptoms before everything:    Bloating, gassy, fatigue, abdominal uneasiness/unsettled, occasional back and forth between constipation and loose stools, severe brain fog, migraines, anxiety

Symptoms after gluten free diet:  Everything above has gone away except abdominal uneasiness in the middle of the night, which I'm tracking.

Tested going on gluten for one day, symptoms included:  really gassy, a lot of abdominal uneasiness, and high anxiety from the discomfort.   I might try again soon. 

Other things to note in case they matter:
- I have had psoriasis my entire life. I have found info linking psoriais to high IgA and looking like celiacs, but I'm not certain.  
- History of GI issues throughout life, never diagnosed of cause.
- Family history of colon cancer, GI issues, and auto-immune diseases
 

Hi sound like my story, I'll add I ended up being taken to the hospital in an ambulance because my pain was a 20 and I couldn't stop throwing up. My first blood test showed no gluten sensitivity. My GI doctor after having ALL the test and being off gluten for weeks, said I have no sensitivity to gluten. I have every single symptom that you have plus more. I know I can't tolerate gluten. I know what's wrong with me and has been for years. I eat gluten free and will continue. It's very frustrating that my primary care doctor and my GI doctor that's I've seen off and on for 10 years, being told that there is nothing wrong with me. I was told I have a slow digestive stomach and my body holds to much gas and to take gas-x. I'm on this site to learn because I feel alone. 

[Scott Adams]

Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score. 

Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis.

The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion. There is no "Weak Negative" category, for example. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!). 

Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease.

Unfortunately many people will continue to suffer and eat gluten due to these errors in performing or interpreting the tests for celiac disease. Some will find out about the majority here who fall into the non-celiac gluten sensitivity zone and go gluten-free and recover, but many will continue suffer needlessly. Consider yourself lucky if you've figured out that gluten is the source of your issues and you've gone gluten-free, because many people never figure it out.

[Eldene]

On 9/11/2023 at 7:10 PM, Scott Adams said:

Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score. 

Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis.

The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion. There is no "Weak Negative" category, for example. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!). 

Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease.

Unfortunately many people will continue to suffer and eat gluten due to these errors in performing or interpreting the tests for celiac disease. Some will find out about the majority here who fall into the non-celiac gluten sensitivity zone and go gluten-free and recover, but many will continue suffer needlessly. Consider yourself lucky if you've figured out that gluten is the source of your issues and you've gone gluten-free, because many people never figure it out.

Hi Scot - I am getting desperate! I'm am a State Pensioner and State patients in South Africa do not get tested, due to a "lack of funds" from the Government. I have áll the symptoms and feel like dying some days! I live in a Care Home with a very understanding Sister in charge - though, I have to buy my own gluten free breakfast and supper, with the aid of a sponsor. I have to share the same kitchen and dining room  with 10 other residents, and am sure my food ís being contaminated. I keep my food locked and my eating utensils in separate cupboards, and cook my own lunch. WHAT ELSE CAN I DO🙏?

[trents]

6 hours ago, Eldene said:

Hi Scot - I am getting desperate! I'm am a State Pensioner and State patients in South Africa do not get tested, due to a "lack of funds" from the Government. I have áll the symptoms and feel like dying some days! I live in a Care Home with a very understanding Sister in charge - though, I have to buy my own gluten free breakfast and supper, with the aid of a sponsor. I have to share the same kitchen and dining room  with 10 other residents, and am sure my food ís being contaminated. I keep my food locked and my eating utensils in separate cupboards, and cook my own lunch. WHAT ELSE CAN I DO🙏?

Check with the staff and make sure they are not using the same utensils to cut, stir and serve the gluten free food that you eat during the morning and evening meals and that it isn't being cooked in the same pots and pans. What about medications and supplements? Wheat starch can be used as a filler in pills. Have you checked to see that all those thing are gluten free? If you are consuming mainline foods that are not labeled "gluten free," have there been any ingredient changes in the formulation over time that would make them no longer gluten free? Finally, have you considered the possibility that you may be cross reacting to some food that does not contain gluten but has proteins with a similar structure as gluten. This is common in the celiac population. Some common offenders are dairy, eggs and oats.

[Eldene]

Hello Scot - no, I buy guaranteed (with gluten free stamp) breakfast cereals and rice cakes (brown rice is naturally gluten free). I get my peanutbutter from the owner of a health shop who goes gluten free himself. I strictly use my own pots & utensils and wash them separately myself. Tx.

Just now, Eldene said:

Hello Scot - no, I buy guaranteed (with gluten free stamp) breakfast cereals and rice cakes (brown rice is naturally gluten free). I get my peanutbutter from the owner of a health shop who goes gluten free himself. I strictly use my own pots & utensils and wash them separately myself. Tx.

I do, however, drink a powdered supplement from the Clinic, which has casein in. As 90% vegan, I think this is my challenge.

[Scott Adams]

Being both gluten-free and vegan can be very challenging in terms of maintaining a well-balanced and nutritious diet. Things like eggs and cheese would add a lot of nutritional options. Will your healthcare pay for a nutritionist to help you with your diet? 

If I were in your situation I think I would see if it is possible for you to prepare all of your own meals, which would allow you to avoid possible cross-contamination.

[linko]

Hi everyone, 

It's been 4 months and I thought I would give another update for anyone who follows or finds this post. 

Overall I have had multiple symptoms completely go away after going gluten free and have not returned. 
I also got a 23andme genetic test and found that I do have a variant for celiac. 
- My brain fog has vastly improved since going gluten free. Every month is like another layer lifted and I'm very surprised that I was much worse before and didn't realize it. 
- My migraines were 2-3 times per month, but I haven't gotten any since going gluten free. 
- My fatigue has been improving gradually over the past 6 months. 
- Joint and back pain has been going away gradually, which may or may not be related (I was having a hard time exercising before due to fatigue, but not as much now). 
- My sleep has improved some, though I'm still having issues and may or may not be related to celiacs. I'm going in for a sleep test soon. 
- I have had a few digestive issues like bloating and discomfort, which I've tracked most of them to accidental or small amounts of gluten intake from things like sauces. But I can't always trace things back and may have another issue (see below)
- I have always had sensitivity to caffeine, but now it seems highly amplified and even the smallest amount of caffeine is extreme to me.  

Also, I recently found out something that may or may not be correct, but interesting to possibly share.  I have had very high bilirubin levels for many years, maybe my entire life. I found out from studies that high levels can help fight off diseases and many issues in the body, including things like IBD. It made me curious about whether that plays into why they only found very minor damage in the biopsy, and possibly whether I have had celiac for a long time but without symptoms.  Just a curiosity of potential connection. I haven't found any correlation yet, but I'm going to continue researching out of curiosity. 

Question
My recent celiac lab results are showing vast improvements in tTg-IgA (see below), but Immunoglobulin A is still very high and I don't know why. My doctor said like 2 months ago to build digestive health and treat it like you would treat IBS to see if that helps bring it down.  The GI doc said it wasn't a concern after meeting a month after the biopsy.  Here's my blood tests over time, including my recent ones. 

First results, for initial testing
tTg-IgA: 247.6
Immunoglobulin A: 500
EMA-IgA: negative

Second results, at time of biopsy. (I was gluten free for 2 months, then went back on gluten for a month for the biopsy)
tTg-IgA:  47.2
Immunoglobulin A: 475
EMA-IgA: negative

Third results, about 7 months after 2nd results at biopsy
tTg-IgA:  15.9
Immunoglobulin A: 474
EMA-IgA: negative

So Immuloglobulin A IGA is still very high.  I thought I have been eating well and improving my gut health, but apparently not.   I'm going to research more about what I can do, and probably see my doctor again, but thought I would put it here in case anyone might be able to help. I do have an autoimmune disorder, psoriasis, which I thought I've read that auto-immune disorders can cause that to be higher.  

tTg-IgA is almost below the 15.0 level, so that's great.  It's possible I may have accidently consumed a little gluten 2 days before the test, as I had some minor symptoms that I then traced back to something I ate that had sauce I wasn't sure about if it was gluten free or not. 

That's all for now, I'll keep updating in the future if there is anything else to report that I think may be useful for anyone reading this in the future. 

Moderators:  if it's best to post my question as a new topic, I can do so instead of here.