My bloods coming back negative

[Kitkatco]

Hiya guys! 
I had a blood test to check for coeliac but came back negative. Been gluten free for 4 days now and already feeling so much better but confused as to why it’s negative. I literally have all the symptoms, peripheral neuropathy, itchy blistering skin, horrible bowel movements, fatigue, rise in anxiety and adhd and pain all around my joints and difficulty moving my fingers and toes in the mornings and evenings. I’ve been back and forth to the doctors the past 2 years whilst this has gone on and given the wrong medication which burnt and blistered my skin (eeek!) and told its IBS or I’m making it up lol. I feel like it’s linked to gluten since the pain and rash already beginning to calm down. But feel like the blood test would’ve validated something? Just wondered if anyone’s gone back and forth with symptoms like this and found a way? Feel like I now have to listen to my body and not what other people say! 

[trents]

Since you used the expression "bloods" in reference to blood antibody testing and used the British spelling of celiac disease, I am assuming you live in the UK. In the UK it is common practice for the physician to order only one celiac antibody test, the tTG-IGA. It is the best all around test and not expensive to perform but it does miss a certain small percentage of people who do have celiac disease. It is unfortunate that a more complete celiac antibody panel isn't done by UK physicians.

It is also possible that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease and is 10x more common. However, there is no good test for NCGS. Celiac disease must first be ruled out. Both conditions require a life-long commitment to eliminating gluten. Some experts feel that NCGS can be a precursor to celiac disease.

Since you have already embarked on a gluten-free diet, be aware that you would need to go back on regular amounts of gluten for 6-8 weeks before any additional blood testing is done and for two weeks if you go for an endoscopy/biopsy to check the condition of the villi that line your small bowel. The villi are damaged by celiac disease.

There is also the option of getting a skin biopsy to check for celiac disease. The "itchy, blistering skin" you describe sounds like it could by DH (Dermatitis Herpetiformis), an epidermal expression of celiac disease which is considered to be definitive for celiac disease. No other known cause.

If further testing is not possible in your healthcare system, just go all in on a gluten-free diet. This would require education so that you do not fall victim to the unexpected places and ways gluten gets into food.

[Kitkatco]

  On 6/16/2023 at 2:29 PM, trents said:

Since you used the expression "bloods" in reference to blood antibody testing and used the British spelling of celiac disease, I am assuming you live in the UK. In the UK it is common practice for the physician to order only one celiac antibody test, the tTG-IGA. It is the best all around test and not expensive to perform but it does miss a certain small percentage of people who do have celiac disease. It is unfortunate that a more complete celiac antibody panel isn't done by UK physicians.

It is also possible that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease and is 10x more common. However, there is no good test for NCGS. Celiac disease must first be ruled out. Both conditions require a life-long commitment to eliminating gluten. Some experts feel that NCGS can be a precursor to celiac disease.

Since you have already embarked on a gluten-free diet, be aware that you would need to go back on regular amounts of gluten for 6-8 weeks before any additional blood testing is done and for two weeks if you go for an endoscopy/biopsy to check the condition of the villi that line your small bowel. The villi are damaged by celiac disease.

There is also the option of getting a skin biopsy to check for celiac disease. The "itchy, blistering skin" you describe sounds like it could by DH (Dermatitis Herpetiformis), an epidermal expression of celiac disease which is considered to be definitive for celiac disease. No other known cause.

If further testing is not possible in your healthcare system, just go all in on a gluten-free diet. This would require education so that you do not fall victim to the unexpected places and ways gluten gets into food.

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You hit the nail on the head! A UK gal. That’s such a helpful really, I’ll research more into it! Thank you really appreciate the help:)

[Wheatwacked]

  On 6/16/2023 at 10:35 AM, Kitkatco said:

Feel like I now have to listen to my body and not what other people say! 

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Many go through years of misery and misdiagnoses before eventually getting sick enough to get declared. There is Non Celiac Gluten Sensistivity used when someone is ruled out for Celiac, yet shows improvement on Gluten Free Diet. That is about 10% the population; vs. 1% with Celiac!  Same treatment applies: avoid wheat, barley, and rye, and the part generally ignored or missed is that for every food you remove from your diet make sure to replace the nutrients that those foods had.  Almost everyone has low vitamin D, measured by serum 25(OH)D level, and thanks to the efforts of the Royal Academy of Physicians, who admitted that it did not have any direct evidence for this conclusion, legislation was instituted in Great Britain forbidding the fortification of any food or any product with vitamin D.  They have set a safe level at 30 ng/ml, enough to prevent Rickets, but completely dismissing all of the rest of our bones, mental health, and immune system that also require vitamin D to function.

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Using a comprehensive global dataset of daily COVID-19 cases and local environmental conditions, we find that increased daily ultraviolet (UV) radiation lowers the cumulative daily growth rate of COVID-19 cases over the subsequent 2.5 wk.   https://www.pnas.org/doi/10.1073/pnas.2012370118

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The only European station, over which UV radiation increases significantly, is that of Thessaloniki, Greece. Analysis of the clear-sky irradiance for the particular station shows increasing irradiance at 307.5 nm by ∼3.5%/decade during the entire [25 year] period of study,   https://www.sciencedirect.com/science/article/pii/S1631071318301214

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At the same: "Arthritis and Rheumatology, shows a concerning rise in the United States population of the presence of antinuclear antibodies (ANA), the most common biomarker of autoimmunity. Over the course of 25 years, the researchers found an overall 50 percent increase, but certain subgroups showed significantly higher rates than the rest of the population."  Autoimmunity Rates Are on the Rise in the United States

"Vitamin D supplementation for five years, with or without omega-3 fatty acids, helped reduce autoimmune disease by 22%." Vitamin D and Autoimmune Disease

So what is more dangerous? 

1. According to some estimates, more than 23.5 million people in the United States have at least one autoimmune condition. They are a leading cause of death and disability in the country. 
2. OR More than 1 million Americans are living with melanoma.

 

Both affected by UV. You may not get Melanoma by avoiding sunlight, but you surely will develope an autoimmune disease by keeping your vitamin D low.

Sometimes it makes me think that there is a James Bond archnemisi running the show. 😈

[Kitkatco]

  On 6/16/2023 at 3:10 PM, Wheatwacked said:

Many go through years of misery and misdiagnoses before eventually getting sick enough to get declared. There is Non Celiac Gluten Sensistivity used when someone is ruled out for Celiac, yet shows improvement on Gluten Free Diet. That is about 10% the population; vs. 1% with Celiac!  Same treatment applies: avoid wheat, barley, and rye, and the part generally ignored or missed is that for every food you remove from your diet make sure to replace the nutrients that those foods had.  Almost everyone has low vitamin D, measured by serum 25(OH)D level, and thanks to the efforts of the Royal Academy of Physicians, who admitted that it did not have any direct evidence for this conclusion, legislation was instituted in Great Britain forbidding the fortification of any food or any product with vitamin D.  They have set a safe level at 30 ng/ml, enough to prevent Rickets, but completely dismissing all of the rest of our bones, mental health, and immune system that also require vitamin D to function.

At the same: "Arthritis and Rheumatology, shows a concerning rise in the United States population of the presence of antinuclear antibodies (ANA), the most common biomarker of autoimmunity. Over the course of 25 years, the researchers found an overall 50 percent increase, but certain subgroups showed significantly higher rates than the rest of the population."  Autoimmunity Rates Are on the Rise in the United States

"Vitamin D supplementation for five years, with or without omega-3 fatty acids, helped reduce autoimmune disease by 22%." Vitamin D and Autoimmune Disease

So what is more dangerous? 

1. According to some estimates, more than 23.5 million people in the United States have at least one autoimmune condition. They are a leading cause of death and disability in the country. 
2. OR More than 1 million Americans are living with melanoma.

 

Both affected by UV. You may not get Melanoma by avoiding sunlight, but you surely will develope an autoimmune disease by keeping your vitamin D low.

Sometimes it makes me think that there is a James Bond archnemisi running the show. 😈

Expand Quote  

Wow wow! Thanks so much for taking the time, did not think about Vitamin D but of course makes sense. Definitely James Bond Archnemisis behind it all🤯

[knitty kitty]

@Kitkatco,

We're you checked for diabetes?  Uncontrolled diabetes can cause all the symptoms you related (diarrhea, joint pain, peripheral neuropathy, itchy skin rashes, ADHD, and anxiety).  

If you've been eating a high carbohydrate diet (more than 55% carbohydrates make up your diet), you could be on your way to diabetes.  Diabetics lose much of their thiamine Vitamin B1 through the kidneys.  This low thiamine can also contribute to the symptoms you've mentioned.  

Hiding in Plain Sight: Modern Thiamine Deficiency 

(Read section 7.1)

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

And...

The association between type 2 diabetes and attention- deficit/hyperactivity disorder: A systematic review, meta-analysis, and population-based sibling study

https://pubmed.ncbi.nlm.nih.gov/36754221/

And...

The Association Between Diabetes Mellitus and Osteoarthritis: Does Diabetes Mellitus Play a Role in the Severity of Pain in Osteoarthritis?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8857910/