Confused about test results/do I need a diagnosis of celiac

[SarahA]

Starting last year I was having a lot of loss of appetite, frequent bowel movements (sometimes as many as 6 a day), bowel movements waking me in the early morning hours, nausea, vomiting, fatigue, bloating, hiccups and burping after eating or drinking anything, fainting, dizziness, tinnitus, and I ended up losing about 30 lbs in 6 months.  
Since that time I have seen two different primary care providers, a GI, and multiple other specialists and all tests have come back normal with the exception of having reactive gastropathy without h. Pylori, polyps, and the following blood tests:

VITAMIN B12
your Value334 pg/ML

mLStandard Range200 - 1100 pg/mL

VITAMIN D, 25 OH, TOTAL
your Value29 ng/ml

standard Range30 - 100 ng/mL

magnesium 

My value 1.8 mg/dl

reference 1.9-2.8 mg/do

my celiac serology was:

TRANSGLUTAMINASE IGA ABYour Value<1.0 U/mLStandard RangeU/mL

Value Interpretation
----- --------------
<15.0 Antibody not detected
> or = 15.0 Antibody detected

IGAYour Value324 mg/dLStandard Range47 - 310 mg/dL

WHEAT IGEYour Value
<0.10 kU/LStandard RangekU/L

ALLERGEN CLASS Value0

the GI said in his report “duodenal flattening suspicion of celiac” but only took 3 biopsies, which came back negative. From my understanding from reading this forum and many other websites he should have done 4-8 biopsies.   The lab he used also only has a 2 star rating so I’m not sure how accurate their reading was.  

After all of this my new primary care provider advised that Since my IGA was elevated I may have a gluten sensitivity and I could try cutting it out.  That is the only thing that has help with my gastro intestinal problems.  I also started taking supplements and most of the other symptoms have resolved.  I took a 23&me plus health test and I have the rs2187668 T marker for the HLA-DQ2.5 gene which from what I have read is the most common among celiac patients, but also common in 20% of the population.  

My original primary care provider was not running any blood work other than a CBC multiple times which was always normal with the exception of elevated calcium levels and she only seemed to want to send me to specialists without running additional blood work, all of the specialists had poor reviews and the GI doc she sent me to never asked to see blood work. After he did my upper and lower endoscopy and I told him I only felt better after eliminating gluten he said he felt like all my problems were due to my gallbladder removal.  My gallbladder was removed 19 years ago and I have rarely had problems regarding it unless I eat too much greasy food and I know what that feels like when it causes me to be sick.  He also put my on protonix indefinitely for my gastropathy and so I don’t know if my vitamin and mineral counts are low from the medication or if I possibly have celiac.  I do not want to take this medication indefinitely because I know it is not healthy to do so and I don’t know if it is even helping.  
 

How important is a diagnosis of celiac?

Since I have the gene is it possible I have celiac and not gluten sensitivity despite the negative serology and biopsy?  
 

I am just very disappointed in most of my medical care through this process and lack of answers and I know I need to find a new GI that will answer my questions and be knowledgeable about the situation but I’m not sure hoe to find one that specializes in Celiac/NCGS. 
 

Any help or advice is greatly appreciated. 

[Russ H]

9 minutes ago, SarahA said:

Starting last year I was having a lot of loss of appetite, frequent bowel movements (sometimes as many as 6 a day), bowel movements waking me in the early morning hours, nausea, vomiting, fatigue, bloating, hiccups and burping after eating or drinking anything, fainting, dizziness, tinnitus, and I ended up losing about 30 lbs in 6 months.  
Since that time I have seen two different primary care providers, a GI, and multiple other specialists and all tests have come back normal with the exception of having reactive gastropathy without h. Pylori, polyps, and the following blood tests:

VITAMIN B12
your Value334 pg/ML

mLStandard Range200 - 1100 pg/mL

VITAMIN D, 25 OH, TOTAL
your Value29 ng/ml

standard Range30 - 100 ng/mL

magnesium 

My value 1.8 mg/dl

reference 1.9-2.8 mg/do

my celiac serology was:

TRANSGLUTAMINASE IGA ABYour Value<1.0 U/mLStandard RangeU/mL

Value Interpretation
----- --------------
<15.0 Antibody not detected
> or = 15.0 Antibody detected

IGAYour Value324 mg/dLStandard Range47 - 310 mg/dL

WHEAT IGEYour Value
<0.10 kU/LStandard RangekU/L

ALLERGEN CLASS Value0

the GI said in his report “duodenal flattening suspicion of celiac” but only took 3 biopsies, which came back negative. From my understanding from reading this forum and many other websites he should have done 4-8 biopsies.   The lab he used also only has a 2 star rating so I’m not sure how accurate their reading was.  

After all of this my new primary care provider advised that Since my IGA was elevated I may have a gluten sensitivity and I could try cutting it out.  That is the only thing that has help with my gastro intestinal problems.  I also started taking supplements and most of the other symptoms have resolved.  I took a 23&me plus health test and I have the rs2187668 T marker for the HLA-DQ2.5 gene which from what I have read is the most common among celiac patients, but also common in 20% of the population.  

My original primary care provider was not running any blood work other than a CBC multiple times which was always normal with the exception of elevated calcium levels and she only seemed to want to send me to specialists without running additional blood work, all of the specialists had poor reviews and the GI doc she sent me to never asked to see blood work. After he did my upper and lower endoscopy and I told him I only felt better after eliminating gluten he said he felt like all my problems were due to my gallbladder removal.  My gallbladder was removed 19 years ago and I have rarely had problems regarding it unless I eat too much greasy food and I know what that feels like when it causes me to be sick.  He also put my on protonix indefinitely for my gastropathy and so I don’t know if my vitamin and mineral counts are low from the medication or if I possibly have celiac.  I do not want to take this medication indefinitely because I know it is not healthy to do so and I don’t know if it is even helping.  
 

How important is a diagnosis of celiac?

Since I have the gene is it possible I have celiac and not gluten sensitivity despite the negative serology and biopsy?  
 

I am just very disappointed in most of my medical care through this process and lack of answers and I know I need to find a new GI that will answer my questions and be knowledgeable about the situation but I’m not sure hoe to find one that specializes in Celiac/NCGS. 
 

Any help or advice is greatly appreciated. 

Hello Sarah and welcome to the forum. There are some very knowledgeable members who I am sure will comment soon. Indeed it is possible to have coeliac disease but negative serology. Incidentally, have you had your blood sugar tested?

[SarahA]

Yes my blood sugar is always on the high end of the normal range even after fasting.  Usually between 107-111.  

[trents]

Welcome to the forum, Sarah,

Yes, your situation has not been handled properly by the medical professionals you have been dealing with. The PC doc should have run a "full celiac panel" and not just the total serum IGA and the tTG-IGA. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Some people's immune system responds atypically and they throw a negative for the tTG-IGA, which is considered the best one test available. And the sloppiness of the GI doc in his biopsy was appalling. I certainly would look at getting that one redone by someone who knows what they are doing. Samples should be taken from both the duodenum and the duodenum bulb. His comment of "duodenal flattening suspicion of celiac" is telltale that he should have done more sampling. There are other things that can damage villi such as some medications and some disease processes so you might want to research that.

Do you need an official celiac diagnosis? Are you the kind of person who can discipline themselves to totally stay away from gluten whether you have celiac disease or NCGS? The two conditions share many of the same symptoms and the antidote is the same. 

You may also want to look at SIBO (Small Intestine Bacterial Overgrowth).

[SarahA]

1 minute ago, trents said:

Welcome to the forum, Sarah,

Yes, your situation has not been handled properly by the medical professionals you have been dealing with. The PC doc should have run a "full celiac panel" and not just the total serum IGA and the tTG-IGA. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Some people's immune system responds atypically and they throw a negative for the tTG-IGA, which is considered the best one test available. And the sloppiness of the GI doc in his biopsy was appalling. I certainly would look at getting that one redone by someone who knows what they are doing. Samples should be taken from both the duodenum and the duodenum bulb. His comment of "duodenal flattening suspicion of celiac" is telltale that he should have done more sampling. There are other things that can damage villi such as some medications and some disease processes so you might want to research that.

Do you need an official celiac diagnosis? Are you the kind of person who can discipline themselves to totally stay away from gluten whether you have celiac disease or NCGS? The two conditions share many of the same symptoms and the antidote is the same. 

You may also want to look at SIBO (Small Intestine Bacterial Overgrowth).

Thank you, I was having trouble finding information on having negative ttg-iGa and still having celiac, all of the articles I read said it would be due to An IGa deficiency, which I did not appear to have with the elevated IGa levels.  
I have been very good about not eating gluten except I’m not the best at finding hidden gluten yet especially when eating out.  I have been tricked my a few restaurants putting gluten in their grilled meat when I order a salad or accidentally eating a seasoning mix without checking for wheat.  I always feel awful a few hours later with nausea and sometimes vomiting and then the entire next day have fatigue and nausea and loss of appetite. I would say I am getting better through trial and error, but I am trying my best because I can’t stand how it makes me feel.  

[Russ H]

11 minutes ago, SarahA said:

Yes my blood sugar is always on the high end of the normal range even after fasting.  Usually between 107-111.  

Is that 107-111 when fasting? If so, have you tried random testing or 2 hours post-prandial to see what it is like normally?

Also, were you eating gluten in the 6 weeks prior to your coeliac testing?

[trents]

Yes, you can have celiac disease even though the total IGA is not low and the tTG-IGA is in normal range. We have people report that very thing not infrequently on this forum. You can also have negative biopsy and positive celiac antibody scores. 

Recent studies show that the #1 factor in sabotaging the efforts of those with celiac disease in eating gluten free (as opposed to lower gluten eating) is patronizing eateries. I would urge you to consider giving that up. 

Russ314 asks a very important question. Had you already been trying to cut out gluten when your antibody testing and your biopsies were done? If so, you probably invalidated the results.

Edited June 4, 2022 by trents

[SarahA]

13 minutes ago, Russ314 said:

Is that 107-111 when fasting? If so, have you tried random testing or 2 hours post-prandial to see what it is like normally?

Also, were you eating gluten in the 6 weeks prior to your coeliac testing?

I was did not cut out gluten until after the serology and biopsy, because I had not suspected celiac at that point.  The only reason it was ever brought to mind was the report stating suspicion of celiac.  After the biopsy came back negative I went to my new PC and asked to have the serology due to small number of samples taken, and cut out gluten after that.  I was also mistaken on my glucose, after going back through and looking again.  Fasting was between 90-95 and about 4 hours after eating it was between 100-107.  I have had so many blood tests lately I guess I must have mixed up some results.

[SarahA]

15 minutes ago, trents said:

Yes, you can have celiac disease even though the total IGA is not low and the tTG-IGA is in normal range. We have people report that very thing not infrequently on this forum. You can also have negative biopsy and positive celiac antibody scores. 

Recent studies show that the #1 factor in sabotaging the efforts of those with celiac disease in eating gluten free (as opposed to lower gluten eating) is patronizing eateries. I would urge you to consider giving that up. 

Russ314 asks a very important question. Had you already been trying to cut out gluten when your antibody testing and your biopsies were done? If so, you probably invalidated the results.

I already ate out infrequently around only one to two times a month but with my recent experiences I am leaning towards completely giving it up.  

[trents]

This might be helpful: 

 

[Russ H]

38 minutes ago, SarahA said:

I was did not cut out gluten until after the serology and biopsy, because I had not suspected celiac at that point.  The only reason it was ever brought to mind was the report stating suspicion of celiac.  After the biopsy came back negative I went to my new PC and asked to have the serology due to small number of samples taken, and cut out gluten after that.  I was also mistaken on my glucose, after going back through and looking again.  Fasting was between 90-95 and about 4 hours after eating it was between 100-107.  I have had so many blood tests lately I guess I must have mixed up some results.

Ah OK. Diabetes can give some of your symptoms, but your sugar levels don't indicate that.

[Wheatwacked]

You also have low D, magnesium, and B12 is the low end of normal. Nutrient defieciencies are common with Celiac Disease. It is a disease of malabsorption after all.

I think of it more as a poisoning. There is only one treatment. Avoid gluten and take care of any mineral and vitamin deficiencies.

Get a bottle of 10,000 IU vitamin D. At the end of the bottle get your D retested. It may prevent other autoimmune diseases. Possible Role of Vitamin D in Celiac Disease Onset, Vitamin D and the Immune System, Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

With low B12 you may have high homocysteine, an indicator of cardiovascular inflamation. Make sure you are eating enough B6, B12, folate and choline. "Deficiencies in vitamin B12, folic acid and vitamin B6 are associated with raised homocysteine levels. " Methylation and Homocysteine

 

[SarahA]

4 hours ago, Wheatwacked said:

You also have low D, magnesium, and B12 is the low end of normal. Nutrient defieciencies are common with Celiac Disease. It is a disease of malabsorption after all.

I think of it more as a poisoning. There is only one treatment. Avoid gluten and take care of any mineral and vitamin deficiencies.

Get a bottle of 10,000 IU vitamin D. At the end of the bottle get your D retested. It may prevent other autoimmune diseases. Possible Role of Vitamin D in Celiac Disease Onset, Vitamin D and the Immune System, Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

With low B12 you may have high homocysteine, an indicator of cardiovascular inflamation. Make sure you are eating enough B6, B12, folate and choline. "Deficiencies in vitamin B12, folic acid and vitamin B6 are associated with raised homocysteine levels. " Methylation and Homocysteine

 

Thank you, I had not heard of homocysteine.  I will definitely read up on this.  

9 hours ago, trents said:

This might be helpful: 

 

Thank you, I have spent a lot of time on this website but mostly reading the forum posts and I completely missed this.  

[Kate333]

Hi Sarah.  Since you already noticed some improvement on a gluten-free diet, perhaps you could try a STRICTLY gluten-free diet for a longer period of time, like 3-6 months, and see if that significantly reduces some of those symptoms. If so, IMO you would have enough anecdotal evidence to justify a more permanent gluten-free diet, regardless of whether or not formally diagnosed.   The other option is to seek a second opinion EDG/biopsy from a more thorough GI doc.  But I would hesitate to do that if you see marked improvement on a gluten-free diet because, as you know, you must keep eating gluten before another EGD.   Also, you might try dairy-free eating at the same time as gluten-free eating because you may have lactose intolerance.  It is VERY prevalent (up to 70 percent globally), many folks develop it later in life, and it can cause many of the same symptoms you describe.  

Interestingly, both sudden celiac disease + DI symptoms which develop later in life have been linked to earlier severe, chronic stress triggers which can "activate" the previously dormant genetic predisposition to those conditions.   

Also, take a look at your daily life routines/stress level prior to your symptom development. Aside from living in a scary Covid pandemic (which is stressful enough and affects us all), is there anything else upsetting in your life that happened to you before you noticed all these symptoms suddenly happening?  If so, severe, chronic life stress alone could be a likely major factor--even independent of celiac disease (which may be the case, esp. since your tests are all normal).  

Anxiety/depression often presents in many, if not all, the physical symptoms you describe.  A really good website which describes in great detail the brain-gut-body connection and tips for helping to calm the body down is anxietycentre.com.  Whether or not you actually have active celiac disease, it would perhaps be beneficial to consider asking your doctors for a referral for short-term counseling or antidepressant/anxiety meds to help facilitate your healing.

Good luck and I hope you feel better soon.

[SarahA]

12 hours ago, Kate333 said:

Hi Sarah.  Since you already noticed some improvement on a gluten-free diet, perhaps you could try a STRICTLY gluten-free diet for a longer period of time, like 3-6 months, and see if that significantly reduces some of those symptoms. If so, IMO you would have enough anecdotal evidence to justify a more permanent gluten-free diet, regardless of whether or not formally diagnosed.   The other option is to seek a second opinion EDG/biopsy from a more thorough GI doc.  But I would hesitate to do that if you see marked improvement on a gluten-free diet because, as you know, you must keep eating gluten before another EGD.   Also, you might try dairy-free eating at the same time as gluten-free eating because you may have lactose intolerance.  It is VERY prevalent (up to 70 percent globally), many folks develop it later in life, and it can cause many of the same symptoms you describe.  

Interestingly, both sudden celiac disease + DI symptoms which develop later in life have been linked to earlier severe, chronic stress triggers which can "activate" the previously dormant genetic predisposition to those conditions.   

Also, take a look at your daily life routines/stress level prior to your symptom development. Aside from living in a scary Covid pandemic (which is stressful enough and affects us all), is there anything else upsetting in your life that happened to you before you noticed all these symptoms suddenly happening?  If so, severe, chronic life stress alone could be a likely major factor--even independent of celiac disease (which may be the case, esp. since your tests are all normal).  

Anxiety/depression often presents in many, if not all, the physical symptoms you describe.  A really good website which describes in great detail the brain-gut-body connection and tips for helping to calm the body down is anxietycentre.com.  Whether or not you actually have active celiac disease, it would perhaps be beneficial to consider asking your doctors for a referral for short-term counseling or antidepressant/anxiety meds to help facilitate your healing.

Good luck and I hope you feel better soon.

Thank you, I actually did think it could be stress and anxiety at first because I had several upsetting events around the time I started feeling sick and tried counseling at that time.  I also try cutting out dairy, as well as a low FODMAP diet, but removing Gluten was the only think that resolved the GI issues. I have been eating gluten free for about 3 months now and after around two I tried to introduce a small amount of gluten by eating soy sauce because I read that if you have NCGS you might tolerate small amounts and it made me sick.  Then after that got glutened a couple of times at restaurants. That’s what made me decide to make this post because I was worried if it was celiac if I did need a diagnosis to be sure to get the correct follow up care if needed since I was having issues with some of my vitamins and minerals. I didn’t know there was recommended follow up care since the only real treatment is strict diet.  

[trents]

The only real follow up care would be that within a year after starting the gluten free diet you should seek a repeat serum antibody panel to check for progress in healing and compliance with diet. As far as vitamins and supplements go, most of us routinely recommend starting supplementation with a B-complex, D3 and magnesium (all gluten-free of course) to address the chronic vitamin and mineral deficiencies that come along with years of undiagnosed celiac disease. 

[Wheatwacked]

4 hours ago, SarahA said:

I actually did think it could be stress and anxiety

The key here is neurotransmitters, the chemical messengers that tell the cells in our body what to do. 8 Nutrient Deficiencies That May Contribute To Anxiety

Vitamin D. I suffered years with Seasonal Affective Disorder that pretty much became an all the time thing. It was only wnen I increased my daily vitamin D from 8,000 IU a day to 10,000 that the anti depressant effect kicked in and that surprised me on the fourth day like suddenly I was smiling. Our bodies are designed to create and store vitamin D from the UV rays. We store it during the summer sun to last us the rest of the year. But we hide from the sun.  "Effective detection and treatment of inadequate vitamin D levels in persons with depression and other mental disorders may be an easy and cost-effective therapy which could improve patients’ long-term health outcomes as well as their quality of life". Vitamin D and Depression: Where is all the Sunshine?

Lithium: Since we all drink bottled water now, and it seems the mass shootings are increasing. I take 5 mg Lithium Orotate daily. It works for me like Buspirone or Valium but without the woosy. "The results indicate that there is a tendency for lower suicide rates in the prefectures with high levels of lithium in drinking water. Ecological studies explained by researchers Schrauzer and Shrestha have revealed the existence of statistically significant inverse associations between the lithium levels in drinking water and the incidence of suicides, homicides, rapes, possession of narcotic drugs, and in juveniles, the rates of runaway from home.  Lithium in the public water supply and suicide mortality in Greece

a number of observations suggest that environmentally relevant lithium doses may also exert beneficial health effects, leading to a decrease in the rate of suicides and levels of violence. Despite the fact that this element is not officially considered to be a micronutrient, some authors have suggested provisional recommended intakes set at 1000 μg/day for a 70-kg adult  Is Lithium a Micronutrient? From Biological Activity and Epidemiological Observation to Food Fortification

 

 

[GF-Cate]

On 6/4/2022 at 9:18 AM, SarahA said:

I know I need to find a new GI that will answer my questions and be knowledgeable about the situation but I’m not sure hoe to find one that specializes in Celiac/NCGS. 

Here are a few links to lists/resources to find celiac aware doctors:

Celiac.com Doctor Listing

https://www.celiac.com/celiac-disease/celiac-disease-doctor-listing/

Celiac Centers, Labs & Alternative Resources

https://www.beyondceliac.org/celiac-disease/additional-information/hospitals-labs/

The Celiac Disease Foundation Healthcare Practitioner Directory

https://celiac.org/about-celiac-disease/find-a-healthcare-practitioner/

(the previous 2 are US hospitals/doctors, but I'm sure celiac orgs in other countries maintain similar lists)

Building Your Healthcare Team

https://gluten.org/2021/05/11/building-your-healthcare-team/

[GF-Cate]

23 hours ago, SarahA said:

That’s what made me decide to make this post because I was worried if it was celiac if I did need a diagnosis to be sure to get the correct follow up care if needed since I was having issues with some of my vitamins and minerals. I didn’t know there was recommended follow up care since the only real treatment is strict diet.  

This details all of the various types of follow-up care you should have if diagnosed with celiac from time of diagnosis, 3-6 month follow-up appt, 12 month follow-up appt and annual thereafter:

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

It's a great document to bring with you to doctor appointments if you are diagnosed as you may have to advocate for comprehensive follow-up care. 

[SarahA]

6 hours ago, GF_Cate said:

This details all of the various types of follow-up care you should have if diagnosed with celiac from time of diagnosis, 3-6 month follow-up appt, 12 month follow-up appt and annual thereafter:

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

It's a great document to bring with you to doctor appointments if you are diagnosed as you may have to advocate for comprehensive follow-up care. 

Thank you!

[Wheatwacked]

Quote

The multivitamin should not exceed 100% of the daily value (DV) for vitamins and minerals. Treatment & Follow-Up | Celiac Disease Foundation

The above statement is wrong in so many ways. 

"Traditionally, 100% DV has been based on the "amount required to prevent clinical vitamin and mineral deficiencies in healthy 25-year-old men who are 5'9" and 145 lbs." Obviously, that excludes a whole bunch of other people -- not to mention that the average 25-year-old male Americans now weighs 195! In other words, when you see a label that lists 100% daily value of Vitamin C, this basically just means that this is the amount of Vitamin C needed to prevent scurvy in most 25-year-old healthy males that are 5'9" and 145 lbs. Not exactly the standard that most of us want to hold to."   What Does "Percent Daily Value" Actually Mean? | Binto (mybinto.com)"

The current RDA for an adult male is from minimum 90 mg to safe upper limit of 2000 mg.

"He said our vitamin C consumption should be on par with what other animals produce by themselves, typically 10-12 grams a day. Pauling practices what he preaches, having gradually upped his daily doses of vitamin C from 3 grams in the 1960s to a hefty 18 grams today."  Linus Pauling lectures on Vitamin C and Heart Disease    (3 grams = 3000 mg). Dr Pauling died in 1994 at 93 years of age. Maybe he knew what he was talking about.

Quote

Our study revealed that nearly 70% of critically ill patients had hypovitaminosis C, including a high percentage with vitamin C deficiency (32%)   Hypovitaminosis C and vitamin C deficiency in critically ill patients despite recommended enteral and parenteral intakes

Vitamin C Found To Reduce Inflammation Caused by Gluten

[trents]

I certainly agree with Wheatwacked that the MDR for vitamins and minerals is adequate. The only vitamins you need to be careful with as far as overdosing are the fat soluble ones, like A, D and E. And even then, the RMD may be over conservative.