Possible Celiacs?

[cb1988]

Hi,

I'm new here and was hoping for some insight since you all seem so knowledgeable. I'm 31 and started having pain and dizziness after a super stressful time in my life about 8 years ago. It has come and gone over the years but probably always some underlying stuff going on that I just learned to cope with (pain, nausea, loose stools, tingling in feet). Doctors always attributed it to an active lifestyle, wear and tear, and stress. After my son was born 3 years ago I experienced horrible anxiety and it's been rough ever since. I had my second child almost a year ago and have been experiencing joint pain (without swelling), brain fog, muscle pain, numbness/tingling mostly in my feet, lots of new cherry angiomas, and I'm wondering if I have Raynaud's (my fingers turn light just if I grab something out of the freezer then turn normal color pretty quickly so not sure if that's technically Raynaud's). I have rosacea postpartum, horrible depression and anxiety, I just generally feel miserable every day and this is not who I used to be. 

I went to a rheumatologist a few months ago and while I have a positive rheumatoid factor I tested negative for all autoimmune diseases and my inflammation markers were all normal. I'm now working with a naturopath and all of my blood work for wheat sensitivity and celiac pointed to negative except a low immunoglobulin A number. She wants to do the genetic screen for celiac this coming week due to low IGa and my positive RF.  Can I have celiac and only carry the gene for it and it's causing all of these symptoms? Can just being gluten intolerant be causing me all of these issues? I have no known food allergies or autoimmune diseases in my family but my daughter is showing food sensitivities and will be going to an allergist. I also unintentionally didn't have gluten for a few days last week and it was kind of like a light bulb went off and I realized I felt better but started eating it again since I have this blood test coming up. Any insight is so appreciated, I've really enjoyed reading through this forum and finding hope that maybe gluten is my problem and I feel like that's something I can really tackle. Again, I have terrible anxiety so leave out any terrifying diagnoses this could be, I will google and convince myself I have it and am dying.

Thank you! 

[GFinDC]

Hi,

Your symptoms do sound like they could be caused by celiac disease.  The genetic test is a good idea IMHO.  Some people with celiac are sero-negative (don't show up on antibody testing) but still have the condition.

Another test you should ask for is a vitamin and mineral panel.  Damage to the small intestine lining by celiac can cause mal-absorption of nutrients.  People with celiac can be low on vitamin D and some B vitamins and several minerals because they aren't absorbed.

There is a small percentage of people who don't make IgA type antibodies.  So the IgA type antibody testing for celiac is useless for them.  IF you do turn out to have celiac there is a 44% chance your daughter will have celiac or develop it at some point.

Depression and other mental symptoms can be caused by nutrient deficiencies and hormone imbalances caused by them.  Sleep problems can happen too.

 

 

 

[trents]

In your case, because of low IGA, I would recommend pursing an upper GI endoscopy with biopsy of the small bowel lining to check for damaged villi that is the hallmark of Celaic disease. The antibody blood tests for celiac disease are not accurate in people with low IGA. But whether we are talking about the blood antibody test or the endoscopy, you must be eating regular amounts of gluten daily (equivalent of two slices of wheat bread) before the testing. At least 6-8 weeks of gluten consumption before the blood test and at lest 2 weeks of gluten before the scoping/biospy. Many make the mistake of starting to eat gluten free before testing.

If the villi are not damaged then you may have gluten sensitivity for which there currently is no test. It is diagnosed by the improvement of symptoms when eliminating gluten from the diet. It carries many of the same long term health risks as celiac disease and many of the same symptoms. And the antidote is the same. Total avoidance of gluten. 

Are you taking any vitamins/minerals/supplements? A lot of the symptoms you describe could have vitamin/mineral deficiency basis.

Edited May 22, 2021 by trents

[cb1988]

1 hour ago, trents said:

In your case, because of low IGA, I would recommend pursing an upper GI endoscopy with biopsy of the small bowel lining to check for damaged villi that is the hallmark of Celaic disease. The antibody blood tests for celiac disease are not accurate in people with low IGA. But whether we are talking about the blood antibody test or the endoscopy, you must be eating regular amounts of gluten daily (equivalent of two slices of wheat bread) before the testing. At least 6-8 weeks of gluten consumption before the blood test and at lest 2 weeks of gluten before the scoping/biospy. Many make the mistake of starting to eat gluten free before testing.

If the villi are not damaged then you may have gluten sensitivity for which there currently is no test. It is diagnosed by the improvement of symptoms when eliminating gluten from the diet. It carries many of the same long term health risks as celiac disease and many of the same symptoms. And the antidote is the same. Total avoidance of gluten. 

Are you taking any vitamins/minerals/supplements? A lot of the symptoms you describe could have vitamin/mineral deficiency basis.

This is really helpful advice! I've been pregnant and breastfeeding for 4 years straight so I'd be shocked if I don't have some deficiencies. My funct med Dr. ran ferritin, B12, magnesium, vitamin D and all of that was normal range. I'm taking a prenatal, omega 3's, and magnesium. I'm praying it's a gluten sensitivity and can be managed. All of this time the thought of celiac or sensitivity being the case never occurred to me but maybe it fits? I'm certainly anxious to cut out gluten and see if there's an improvement but understand I have to wait.

[Scott Adams]

Even with low IgA blood test results can still be accurate, but only IF they follow the protocol in this article:

 

[trents]

Scott, in the article you site you make this statement, "These tests are very specific because certain antibodies only appear in those with gluten sensitivity, celiac disease and/or dermatitis herpetiformis."

This seems to contradict the information you gave in a forum conversation a few days ago where you sated there currently is no test for gluten sensitivity.

[Scott Adams]

Sort of, but maybe not a contradiction…so what I mean is that some people with gluten sensitivity may have elevated antibodies, but they are still below the cut off for celiac disease, and they may also not have flattened villi. They are in the grey area where they are have a reaction to gluten, but just not one that fits the definition of celiac disease.