Both those blood tests came back normal. My sister mom and son have celiac. I have been sick with painful bloating. stomach problems and those rashes for as long as I can remember. They tell me I don't have celiac though. The doctor was pretty rude about me asking for testing and refused to do anything else other than the blood test.
Current tests to diagnose celiac disease have a lot of room for improvement. No wonder they say a significant percentage of those with celiac disease go undiagnosed. The blood test may not be positive until significant amount of damage is done, and the biopsy can miss it because the disease is patchy and the small intestine is long. I have heard of people who were first told they didn’t have celiac disease because they tested negative only to find that 5- 10 years later, they indeed have it, but now with many complications.
Thank you so much, was very informative! I wish this doctor has a UA-cam channel and makes more educational videos like this because he's so amazing in teaching.
You must write your politicians and tell them to allocate money in Bills for celiac disease research and awareness. Write your senators and house representatives.
Step 1 should be to start a strict GF diet if you suspect the problem is gluten. If diet works, "then" you have options. You can go back to gluten to see if symptoms return or get on with your life staying on the diet. It's not complicated, just common sense. Of course, if you must have an official diagnosis, then go through the entire process and be prepared to suffer.
The majority of people w/ CD have specific alleles in the HLA-DQ1 and HLADQB1 genes (HLA-DQA1*05, HLA-DQB1*02 and HLA-DQB1*0302). The presence of these HLA alleles implies an increased risk for celiac disease. These can be detected through a DNA test.
For someone to develop celiac disease they need to carry a single gene of DQ2 or DQ8 or a combination of these two overlapping genes. Which gene you carry may increase or decrease you overall risk for developing CD in your lifetime. If an individual does not carry these genes, they are highly unlikely to develop CD. DQ2.5 is a variant of the DQ2 molecule. For our community, the most important take home message is that in order to develop celiac disease you must carry the genes.
CD occurs in 2-5% of people with selective IgA deficiency. All symptomatic IgA deficient patients should be referred for endoscopic small intestinal biopsies regardless of their serology results, as false negatives can occur. In asymptomatic individuals with IgA deficiency, the lab may be able to perform IgG-TTG or an IgG-deamidated gliadin peptide (IgG-DGP). Note - Negative HLA-DQ2 or DQ8 genetic tests are helpful to exclude the diagnosis of CD because over 99% of patients with CD are positive for HLA-DQ2 or DQ8. However, approximately 30% of the general population tests positive for one of these HLA types and most do not develop CD. www.celiac.ca/healthcare-professionals/management/
People make 5 types of antibodies (immunoglobulins): IgA, IgD, IgE, IgG and IgM. IgA is the major type of antibody made by the immune cells in the lining of the digestive tract. About 1 in 500 to 700 otherwise healthy people do not make IgA: this condition is known as IgA deficiency. Patients with IgA deficiency are at increased risk of infections to their respiratory and digestive tracts. For some reason, celiac patients are more likely to have an IgA deficiency. This is important because if you are IgA deficient, some of the key tests that doctors order to figure out if you have celiac disease may be normal, even if, in fact, you do have celiac disease.
@@lavellnutrition For those who are symptomatic and have a negative TTG-IGA, it would be beneficial for them to ask their physician if they may be IGA deficient. As TTG-IGA is IGA dependent,, and with a deficiency the bloodwork may show a false negative.
I had high EOS and have both genetic markers for celiac. Did you have any leg tingling, burning stomach issues, or sleep disturbances? Since stopping gluten, all symptoms have gone away except for the sleep issues.
Both those blood tests came back normal. My sister mom and son have celiac. I have been sick with painful bloating. stomach problems and those rashes for as long as I can remember. They tell me I don't have celiac though. The doctor was pretty rude about me asking for testing and refused to do anything else other than the blood test.
Did you bother to go strict GF to see if your symptoms improved?
Current tests to diagnose celiac disease have a lot of room for improvement. No wonder they say a significant percentage of those with celiac disease go undiagnosed. The blood test may not be positive until significant amount of damage is done, and the biopsy can miss it because the disease is patchy and the small intestine is long. I have heard of people who were first told they didn’t have celiac disease because they tested negative only to find that 5- 10 years later, they indeed have it, but now with many complications.
Thank you so much, was very informative! I wish this doctor has a UA-cam channel and makes more educational videos like this because he's so amazing in teaching.
We agree, we will try and see if we can get him in board for some new things!
This was incredibly informative. Thank you for making this publicly available.
Glad it was helpful!
You must write your politicians and tell them to allocate money in Bills for celiac disease research and awareness. Write your senators and house representatives.
What would be the next step if you had high ttg IGA and biopsy was negative? If you were to gf diet after would the next ttg iga be accurate?
What about the BioPlex method (in BC) for it which is supposed to check if you have IgA deficiency but doesn't report levels
Step 1 should be to start a strict GF diet if you suspect the problem is gluten. If diet works, "then" you have options. You can go back to gluten to see if symptoms return or get on with your life staying on the diet. It's not complicated, just common sense. Of course, if you must have an official diagnosis, then go through the entire process and be prepared to suffer.
What if you have negative everything except elevated IgA (388)and high (tTG) IgG (12)
I have the same exact thing. Did you find out yours?
What do you call HLA DQA1:05 ? It's an allele on the HLA DQ 2 gene.
The majority of people w/ CD have specific alleles in the HLA-DQ1 and HLADQB1 genes (HLA-DQA1*05, HLA-DQB1*02 and HLA-DQB1*0302). The presence of these HLA alleles implies an increased risk for celiac disease. These can be detected through a DNA test.
What about HLA DQA1:05? I was told that this is called Celiac Disease 2.5. Have your heard of it?
For someone to develop celiac disease they need to carry a single gene of DQ2 or DQ8 or a combination of these two overlapping genes. Which gene you carry may increase or decrease you overall risk for developing CD in your lifetime. If an individual does not carry these genes, they are highly unlikely to develop CD. DQ2.5 is a variant of the DQ2 molecule. For our community, the most important take home message is that in order to develop celiac disease you must carry the genes.
@@CCACeliac Then is HLA DQa1:05 an allele on the HLA DQ2 molecule why to doctors insist on a biopsy if all the symptoms are present?
What if your intestines are damages and you can't make IgA well?
CD occurs in 2-5% of people with selective IgA deficiency. All symptomatic IgA deficient patients should be referred for endoscopic small intestinal biopsies regardless of their serology results, as false negatives can occur. In asymptomatic individuals with IgA deficiency, the lab may be able to perform IgG-TTG or an IgG-deamidated gliadin peptide (IgG-DGP). Note - Negative HLA-DQ2 or DQ8 genetic tests are helpful to exclude the diagnosis of CD because over 99% of patients with CD are positive for HLA-DQ2 or DQ8. However, approximately 30% of the general population tests positive for one of these HLA types and most do not develop CD.
www.celiac.ca/healthcare-professionals/management/
What is low IgA level exists because so much damage has been done to the endothelium that that don't produce it anymore?
People make 5 types of antibodies (immunoglobulins): IgA, IgD, IgE, IgG and IgM. IgA is the major type of antibody made by the immune cells in the lining of the digestive tract. About 1 in 500 to 700 otherwise healthy people do not make IgA: this condition is known as IgA deficiency. Patients with IgA deficiency are at increased risk of infections to their respiratory and digestive tracts. For some reason, celiac patients are more likely to have an IgA deficiency. This is important because if you are IgA deficient, some of the key tests that doctors order to figure out if you have celiac disease may be normal, even if, in fact, you do have celiac disease.
@@CCACeliac Yes, I am aware. I know this, so why don't doctors understand it?
@@lavellnutrition For those who are symptomatic and have a negative TTG-IGA, it would be beneficial for them to ask their physician if they may be IGA deficient. As TTG-IGA is IGA dependent,, and with a deficiency the bloodwork may show a false negative.
None of these test were accurate on me.
My sign were eosinophils counts really high, low vitamin d: Marsh 3c
Me ether, didn't show in anything but by Biopsy...
@@kstef8526 What about your Hla marker ? Positive for dq2 or dq8?
I had high EOS and have both genetic markers for celiac.
Did you have any leg tingling, burning stomach issues, or sleep disturbances?
Since stopping gluten, all symptoms have gone away except for the sleep issues.
@philmcrackinnow The fact symptoms went away on diet confirmed gluten was the ptoblem.
Gluten must be banned.
Doesn't need to be banned just avoid it.
This was incredibly informative. Thank you for making this publicly available.
Glad it was helpful!