Dr strongly suspects celiac, so far all tests negative

[KatrinaMindy]

Has anyone here had their celiac disease diagnosed by capsule endoscopy, after negative blood tests and endoscopy?

I have had a number of health issues over the last 20 or more years. There is a family history of celiac disease on my mother’s side going back many generations, though my mother never was diagnosed, but (like me) she did have quite a lot of symptoms.  I am now 43, female.  I have had:

- cyclical diarrhoea / constipation (chronic, always)

- gastric reflux (chronic, always)

- eosinophilic esophagitis (diagnosed 2014) 

- gall stone, and gall bladder removed 2014

- infertility, and multiple first trimester miscarriages

- endometriosis suspected, but not confirmed.  

- diverticulitis, severe  inflammation resulting in colon resection 2020

- DVT, pulmonary embolism 2022, and a menstrual hemorrhage due to blood thinners

- iron deficiency anemia -  chronic, mild anemia at every blood test I have ever had, but now more severe and resistant to treatment since my  clots in 2022

- vitamin D deficiency

- diabetes diagnosed 2022 - assumption that it is type 2- no full panel was done. I don’t take insulin. 

- migraines, increasing frequency and severity, esp in last 6 months, probably due to anemia

because the anemia is resistant to treatment, my dr referred me to gastroenterologist, who actually has some celiac specialist knowledge.  My dr suspected ulcers, but no evidence of that on endoscopy.

blood tests were done, IgA and IgG, both came back in normal range.  IgA levels were normal.  Endoscopy and colonscopy last week showed no changes in duodenum - apart from redness and inflammation.  Dr chose NOT to take biopsies from duodenum, though she did take some from stomach.  She said she still thinks I have celiac disease and wants to do capsule endoscopy next.  Wondering if anyone has had a similar difficult diagnostic pathway?  

 

there is also a weird kind of hearing loss, which is in my family alongside the celiac disease - progressive bilateral, symmetrical, sensorineural hearing loss.  Mine is currently fading rapidly - I’m losing about 5 decibels per year and expect to be profoundly deaf across all frequencies by the time I’m 60.  I saw some articles suggesting a link between sensorineural hearing loss and celiac - wondering if anyone else has this too?
 

 

 

 

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[trents]

Welcome to the forum, KatrinaMindy!

Can you be more specific about which IGA and IGG tests were run? Can you post the results both test numbers along with the ranges used by that lab to determine negative vs. positive? There are also DGP and EMA tests that can be run to detect celiac disease.

Do you know whey the doctor did not do biopsies of the small bowel lining during the endoscopic procedure? Several samples should be taken from both the duodenum and the duodenum bulb. Damage can be patchy. Unless the damage is severe, it may not be visible during the scoping. By any chance, had you already been restricting your gluten intake prior to either the blood testing or the endoscopy?

I can't see how the capsule endoscopy would be much of an improvement over the conventional endoscopy but it could give a more complete picture of your GI track as a whole.

Have you also considered the possibility that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease? Though, I would have to say, many of your symptoms scream of celiac disease.

I would also suggest you consider genetic testing to confirm whether or not you have the genetic potential for celiac disease.

[trents]

Also, have you been checked for pernicious anemia? This is anemia caused by death of the parietal cells in the stomach. These cells produce "intrinsic factor" that is necessary for B12 assimilation which in turn, is necessary for iron assimilation. Have you had your B12 levels checked?

And concerning your pulmonary embolism, I had bilateral pulmonary emboli at age 61. Turns out it was due to a genetic clotting disorder known as Factor 5 Leiden. Maybe someone should check you for that. You shouldn't be getting blood clots like that at your age.

[Scott Adams]

Were you eating at least 2 slices of wheat bread worth of gluten for at least 6 weeks before your blood panel for celiac disease? Please let us know more about your blood test results.

Most of the symptoms you've had could definitely be related to untreated celiac disease.

Edited May 2, 2023 by Scott Adams

[knitty kitty]

@KatrinaMindy,

I've had hearing loss related to untreated Celiac Disease.  I've had almost all those symptoms you listed.  (No resection.)

Please, please, please, get checked for nutritional deficiencies, especially Thiamine Vitamin B1, as soon as possible.  Vitamin deficiencies need to be corrected as quickly as possible so the damage does not become permanent.   

Untreated Celiac Disease results in malabsorption of essential vitamins and minerals.  The eight essential B vitamins cannot be stored in our bodies for much longer than a month.  We need to replenish B vitamins, especially Thiamine, every day. 

Insufficiency or deficiency symptoms of Thiamine can appear in as little as as a week.  A person can have borderline thiamine insufficiency for years.  Thiamine deficiency is usually associated with alcoholism, and gastric bypass, but thiamine deficiency can happen in Celiac Disease because of the same sort of malabsorption happening.  

My doctors tried to treat each organ dysfunction separately, but it's a systematic problem.  Every cell in our bodies need Thiamine to provide energy and enzymes that make our bodies work properly.  Without sufficient thiamine, the mitochondria don't work.  If the mitochondria don't work, body organs don't function properly and we can get a myriad set of symptoms.

In Type Two Diabetes, Thiamine is lost at an accelerated rate through the kidneys.  This plus malabsorption is a recipe for disaster.

Doctors undervalue the importance of vitamin and mineral deficiencies.  My doctors were clueless, shrugged their shoulders and sent me away without answers or health improvements.  I was disheartened.  As a microbiologist, I did my own research into malnutrition and vitamins needed for important cellular functions and found Thiamine at the center of it all.

Ask for an Erythrocyte Transketalase test which will give them an idea of thiamine function. 

Low or deficient thiamine can be corrected by an IV infusion of thiamine under doctor's care, or by over the counter supplements taken in high doses.

Thiamine is safe and nontoxic even at high doses.  I have taken high dose Thiamine with wonderful results.  

The World Health Organization recommends that a person take a minimum of 500 mg/day of Thiamine Hydrochloride for a week.  If health improvements are seen, a thiamine deficiency can be made.  Thiamine supplementation should continue for months to years, as long as health improvements are seen and maintained.  

More about Thiamine...

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

And...

Sensorineural Hearing Loss and Wernicke Encephalopathy: A Case Report and Literature Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7835433/

And...

Wernicke’s Encephalopathy Presenting as Sensorineural Hearing Loss

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7176334/

And...

Evaluation of thiamine as adjunctive therapy in COVID-19 critically ill patients: a two-center propensity score matched study

"Thiamine use as adjunctive therapy may have potential survival benefits in critically ill patients with COVID-19. Additionally, it was associated with a lower incidence of thrombosis."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8242279/

And...Thiamine and diabetes...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7282352/

And...gallbladder...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

And...migraines...

https://pubmed.ncbi.nlm.nih.gov/36047917/

And....more...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

 

Consider getting a genetic test for Celiac genes.  Cut to the chase already.

I dislike how your doctor didn't take biopsy samples from your small intestine while you were already having an endoscopy and yet suspected Celiac already.  

Angst!

I could tell you some nightmarish doctor decisions (or lack there of) that complicated my health and quality of life.  

You need to go gluten free so your body can heal.  

Talk to your doctor about correcting nutritional deficiencies. 

Request the Erythrocyte Transketalase test (before supplementing thiamine),  and request an IV of Thiamine.

My doctors were so ignorant of nutritional deficiencies.  I started High dose Thiamine supplementation at home with Thiamine Hydrochloride.  I had improvement within an hour.  Thiamine is harmless. It won't hurt to try.  I also started taking other forms of Thiamine (Benfotiamine, Tetrahydrofurfuryl disulfide TTFD) and had even more significant improvement.  These forms can get inside the cells of organs and tissues and "resuscitate" the mitochondria and get them working again.  I also supplement all eight B vitamins and magnesium, Vitamin D and Vitamin C.  

Please keep us posted on your progress.  Do talk to your doctor about supplementing Thiamine!!!

[KatrinaMindy]

On 5/3/2023 at 1:06 AM, Scott Adams said:

Were you eating at least 2 slices of wheat bread worth of gluten for at least 6 weeks before your blood panel for celiac disease? Please let us know more about your blood test results.

Most of the symptoms you've had could definitely be related to untreated celiac disease.

 No, actually.  I’m not avoiding gluten particularly, but since diabetes diagnosis have been limiting carbs, and so eating gluten probably only every 2-3 days and trying not to consume huge amounts! I am eating more now, as I’ve been advised to continue to eat gluten while we continue pursuing testing and diagnosis. 

[trents]

1 hour ago, KatrinaMindy said:

 No, actually.  I’m not avoiding gluten particularly, but since diabetes diagnosis have been limiting carbs, and so eating gluten probably only every 2-3 days and trying not to consume huge amounts! I am eating more now, as I’ve been advised to continue to eat gluten while we continue pursuing testing and diagnosis. 

The Mayo Clinic recommends the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the day of blood draw or for two weeks leading up to the day of biopsy. I understand this may conflict with your diabetes control.

[KatrinaMindy]

On 5/2/2023 at 9:28 PM, trents said:

Can you be more specific about which IGA and IGG tests were run? Can you post the results both test numbers along with the ranges used by that lab to determine negative vs. positive? There are also DGP and EMA tests that can be run to detect celiac disease.

-- IgA Anti-transglutamse antibodies: <5 U/ml N: <7. [ref <7 negative, 7-10 equivocal, >7 positive]

-- IgG Anti-deaminated gliadin peptide antibodies: <5 U/ml N:<7 [ref <7 negative, 7-10 equivocal, >7 positive]

--IgAL: 238.9 [ref: 65-421 = normal]

--ESR: 43 mm/hr [ref 0-20mm/hr]

 

Quote

 

Do you know whey the doctor did not do biopsies of the small bowel lining during the endoscopic procedure?

 

I'm not super clear on why she decided not to take biopsies.  I think maybe she was being conservative, since I have been on blood thinners, and not wanting to risk a bleed?  I think also that she really expected to see more visible damage somewhere - and since it wasn't in the stomach or duodenum or colon, that she really wants to do the capsule endoscopy to see if it's deeper in the small intestine.  

 

[trents]

6 hours ago, KatrinaMindy said:

-- IgA Anti-transglutamse antibodies: <5 U/ml N: <7. [ref <7 negative, 7-10 equivocal, >7 positive]

-- IgG Anti-deaminated gliadin peptide antibodies: <5 U/ml N:<7 [ref <7 negative, 7-10 equivocal, >7 positive]

--IgAL: 238.9 [ref: 65-421 = normal]

--ESR: 43 mm/hr [ref 0-20mm/hr]

 

I'm not super clear on why she decided not to take biopsies.  I think maybe she was being conservative, since I have been on blood thinners, and not wanting to risk a bleed?  I think also that she really expected to see more visible damage somewhere - and since it wasn't in the stomach or duodenum or colon, that she really wants to do the capsule endoscopy to see if it's deeper in the small intestine.  

 

Nothing in those labs to indicate celiac disease but like you say, your weren't eating much gluten at the time due to a general low carb diet. The sed rate (ESR) is high. That is a nonspecific inflammation marker that could be caused by any number of things like RA or Lupis.