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Megan1980

Member Since 25 Oct 2012
Offline Last Active Dec 03 2012 10:39 PM
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Posts I've Made

In Topic: Gluten Challenge And Awful Symptoms

28 November 2012 - 04:30 PM

Oh, I also should have said, to Ravenwoodglass, my B12 was normal. It was also normal last year when tested but the folate was super high. I asked my doctor what that meant and she said "I don't know" and left the office. This year when tested the B12 was about the same but they've changed levels for folate so I'm not sure if it's okay now. It still looks high but was not in the "abnormal" category this time around-- but I don't really understand the results.

In Topic: Gluten Challenge And Awful Symptoms

28 November 2012 - 04:27 PM

Thanks for all your comments and advice. I had many symptoms suggestive of thyroid issues so I got those antibody tests too. All my panels came back negative. I believe I got the full celiac, including the IGA deficiency or whatever that is, the test to see if you even have enough of the stuff to make it show up. My score was slightly higher than the one I had 15 months before but still not even into the "weak positive" category. I got the thyroid peroxidase enzyme test (TPO) and another couple of thyroid antibody tests. According to all the blood work I've had, nothing is wrong with me besides a low vitamin d level despite my constant high intake and low ferritin, and some BUN level in the blood that when I looked up online said indicative of either low protein diet or malabsorption. I feel I must have some sort of absorption issues to be having those lowered levels.

The thing I can't get an answer on is whether non-celiac gluten intolerance can cause malabsorption or deficiencies. And I know they can cause similar symptoms, but are there any symptoms that would be more indicative of celiac rather than just intolerance. I know I have the genes for celiac and my sister is positive, my other sister has the gene but got a negative blood test, says she feels better when she's gone gluten free but since she doesn't have celiac she doesn't stay on the diet because it's too hard. My mother has never been tested but knows she has issues with gluten. There are lots of other aunts, uncles, and cousins in my family who have confirmed celiac.

Now I'm at the point where I'm being flagged as nuts by my doctors and I'm running out of hope. I have so many symptoms, it's crazy.

I've had full-on hallucinations, what I believe was occipital lobe seizure (my symptoms were perfectly described by the symptoms list for it) numbness, tingling, sudden muscle weakness, muscle wasting, cognitive issues, I could go on and on.

I understand that some people don't see the need for diagnosis, but I would like to know whether I have celiac or just intolerance. To me it's the difference between worrying about if I go out to eat and soy sauce touches something or working in a kitchen and inhaling flour (I've been a cook so it's important to know how careful I need to be). If I'm gluten intolerant and it's not ruining my intestines and possibly my brain and possibly leading to lymphoma, that's a huge difference between just maybe feeling crappy for a bit.

I hope that makes sense. I've been reading around here for answers and done tons of research online but I still can't get to the bottom of celiac vs. non celiac gluten intolerance.

In Topic: Anemia/vitamin Deficiency Without Villi Damage?

28 November 2012 - 03:41 PM

Most sufferers of autoimmune diseases have deficiencies in vitamins and minerals; D, B12, iron and calcium are commonly low in things like hypothyroidism, Lupus and others.

Conversely, you can have AI diseases and have great blood work. I have celiac, ITP, and hashimotos and I have fantastic blood work, cholesterol, iron and my B12 is above the normal range. I was slightly low in D but still well within normal range so I tripled my D supplements.

Non celiac gluten intolerant people have the same symptoms as celiacs as well as many of the same deficiencies.... As far as I can tell, there is no hard and fast rule when it comes to this area... frustrating as that is.

Best wishes.


Do you have a source for the information that non-celiac gluten intolerance can cause deficiencies, because I've been looking for that info everywhere and haven't been able to find it.

I have symptoms that fit with Hashimoto's and celiac but my celiac panel came back negative as did my thyroid antibodies. The only thing my blood shows is low vitamin d (though I've been taking it for years) and low ferritin. Also I had a low BUN score which when I looked up it said it was either from a low protein diet or malabsorption. I do not have a low protein diet.

I'd love to get some answers! At this point I've been told I have somatization, but I know that's not the case.

In Topic: Should I Re-Test?

28 November 2012 - 02:16 PM

I'm in a similar situation, having lots of symptoms but every test comes back negative. The only thing that's shown up for me is low vitamin D and low ferritin, which seems odd since I've been taking high quality vitamin D3 supplements for years. The low ferritin was surprising because I cook with a cast-iron skillet and eat iron-rich foods, often with citrus or vitamin-C-containing things which is supposed to help it be absorbed.

All my symptoms can't be explained by vitamin D and ferritin being low. But all the tests come back negative. I had a relative who tested negative for celiac but later had to have intestinal surgery. She was diagnosed with celiac based on the damage they found to her intestine. I've heard of many cases of false negatives from looking around online, especially on these forums. Sometimes it's really hard to get diagnosed.

I know this process is really frustrating but do lots of research and don't give up!

I've found in my research that there's a correlation between epilepsy and celiac disease. My younger sister has blood-test confirmed celiac (her numbers were so high they didn't bother to do a biopsy) and she has migraines as well.

In Topic: Can Constipation Be A Symptom Of Celiac?

02 November 2012 - 10:35 PM

My older sister says when she went gluten-free she actually went at least once a day instead of every couple of days or more. She has the gene or genes for celiac but has never had a positive test.