seattlejoy

That is interesting. Since both IgA tests went down substantially -- it is puzzling.

Did they run a tTG IgG? Any change there?

Since it is a surpising number - I think I'd have it re-run to make sure it was an accurate result.

Looks like you are doing well on removing gluten, otherwise the other numbers would not have fallen so.

How about symptom improvement?

Are you feeling better?

Thanks for asking! I don't see a tTG IgG. I feel better than I did before diagnosis but I definitely don't feel great. I have had all my food sensitivities and allergies ran (IgG and IgE). I am seeing a specialist, Dr. Wangen next month.

I was diagnosed with Celiac after blood and biopsy in May 2012. I keep mulling over my December results after being obsessively gluten free. My whole family and household is gluten free, I cook from scratch and rarely ever eat out unless I have spoken to manager and chef. I'm very aware of hidden gluten and believe I am doing a great job but my Gliadin IgG has raised...

TT IgA went from 129.6 to 4.5

Gliadin IgA went from 113.8 to 22.1

Gliadin IgG went from 57.7 to 131.9

My doctor didn't say much about it but I don't think she is that familiar with these tests either.

Can anyone help me figutre out what this means?

Thank you!

Hi, Does anyone know of a 'real' celiac specialist in Seattle? I know about Driscoll... and he's not what I'm looking for. He told me not to worry about my Celiac because I had a biopsy after a month on GFD last year and it was clear. I had records in my hand from Columbia 2004-2006 (from when I lived in NYC) which stated a Celiac diagnosis (although 'mild' compared to a lot of people here). I used to see Suzanne Lewis at Peter Greene's office, but now that I'm in Seattle, finding someone with that level of expertise is tough. There are many GI specialists who list Celiac in their areas of expertise, but they really aren't. My biopsy was done at Polyclinic and then I saw Driscoll as a backup. The doctors in both of those places told me I didn't have to be eating gluten since it had only been a month on GFD. I need someone who is well-versed on the neuro symptoms because my gut symptoms had faded over the years and all I had was neuro (BAD) when I saw these docs. They really didn't know anything about it.

My primary is a great ND and she seems to know a lot, but I much prefer my experience at the Celiac Disease Center at Columbia. <spoiled>

Any recommendations would be great. Or maybe some great doc can move to Seattle and start a research center!

There is actually this guy here, Dr. Wangen, Open Original Shared Link - but he doesn't take insurance and I'm hoping to find an MD to compliment my ND.

Thanks!

Did you ever make any progress on this? I am still searchin for someone that is better educated to help me navigate getting my body back on track. Would you mind sharing names of any MD or ND that you may have come across?

Of course, anyone else that might be able to share their pracitioners would be appreciated as well!

I missed this post earlier this year. Thanks for that advice. I will try that.

Most of what she gave me is liquid or powder- liquid vitamin D, calcium and fish oil, powdered probiotics, powdered L-glutamine, vitamin b injections....

But I do have a few other capsules for iron and such.

I believe they suggest holding off on gluten now till 12 months minimum. Dr. Fassano is currently researching the time it is best to introduce it but in the small study, the later the better.

Where can I get information about the small study? I have a 10 month old and am terrified to ignite this disease in her so I haven't introduced gluten. I don't know what to do.

Wouldn't it be AMAZING to have a research center started here? I am in the same boat as you. I had my biopsy at Eastside Gastro and wasn't impressed with what followed my diagnosis- 3 sheets of paper. One with a list of gluten foods, one page printed from the internet with Celiac Disease Foundation's website (I think), and the last was a small list of gluten-free food. Basically- "Good luck with your Celiac! See you in 6 mos to retest your levels!"

No care whatsoever for repairing my gut, supplements, testing for other conditions and deficiencies, etc. Thankfully I have an ND who tested everything I asked for and helped get me on thyroid and a bunch of vitamins and supps. Now I need someone who will take care of me and tell me what the next step is instead of me doing hours of research and taking it to my ND. I know there are still things that aren't right because I still feel horrible.

I am looking for an informational video to email to my friends and family. I was recently diagnosed Celiac. The videos I see on YouTube are mostly about symptoms and very little information about living with Celiac Disease, etc. I am hoping to explain what the disease is, how important it is for me to not have gluten in my diet and how dangerous cross contamination is (people just don't get it!). I would like it to address WHY Celiac affects us the way it does (villi, absorption, malnutrition, etc). I'm so tired. Some seem to think I'm going to jump up with energy right away and that just hasn't been the case for me.

Additionally, I would like it to explain how the disease can progress to other things (Lymphoma, etc). I need them to not undermine my efforts to be gluten free. They would never intentionally hurt me, I just think they need to know how serious it is.

Maybe one day I will make my own but for now can anyone point me in the right direction?

How did your appointment go?

Sorry you did not get the answers you hoped for before you had to go.

It is certainly reasonable to ask for the genetic test, you just ask for genetic testing for celiac. The genetic test does not diagnose the disease, simply shows whether a person has the tendency towards it or not. The majority of people with the gene don't get the disease.

How old is your son? Some of the testing won't necessarily be accurate if your son is very young. Is your son having symptoms?

Thanks for asking. The Dr. wouldn't run the genetic test. He ordered the TTG and the Endomysial AB with reflex to titer and said that if my son (16 yrs old) has Celiac, that will come back positive. I tried to argue that my research showed that someone can test negative and if they carry the gene, it can be "activated" by a stressful event or virus later in life and I want to know if that is a possibility for him. The Dr. said NO, he either has it or he doesn't and the test will tell. If it is positive, he will then send my son for an endoscopy.

My son has 3 bowel movements a day and says they are normal. He is pretty fatigued and has lost 20 lbs this last year. For the month of January we went off bread products and dairy and all of a sudden my kid is getting up refreshed in the morning and making it to school on time. But that isn't enough for him to make the decision for himself to go off gluten or dairy. It's too tempting. It will take a Celiac diagnosis.

I just found out last week that I have Celiac Disease. I am taking my son into the Doctor here shortly to get him tested. I am afraid that the doctor will not run all the tests necessary though. I would take my son to my Naturopath but she is booked out weeks and I am impatient to know.

Is it reasonable for me to demand a test for the gene? If so, what is that test called?

The appointment is in an hour so whoever can respond by then, it would be appreciated. Otherwise, the info is still good to have.

Thank you all! I feel so lucky to have found this out. If I'm going to have a disease, this is the one to have. 100% treated by food? Are you kidding me? No drugs, therapy, procedures, surgeries... Instead of always treating all these other ailments I have which are ALL Celiac symptoms, I can actually heal myself at home. Potentially heal all the ailments with one treatment. Incredible.

Since I haven't been able to talk to my doctor I have another question...

I have been gluten free since reading my results and I want to do a healing type of cleanse (I had gotten it last week before I even knew about having Celiacs). The cleanse is made up of bentonite clay, ph balancer and whole foods- fruits and veggies.

Should I be waiting to see if my doc wants additional tests before I start modifying my diet and healing my gut?

I'm not sure about the biopsy. I would like to know how advanced the disease is and how much damage I have. It does freak me out that I am that much closer to cancer and other diseases. Does the biopsy give you a number or something?

How long until I start to feel better?

I breastfeed and wonder how that goes along with this. I imagine I have been giving most of the nutrients I absorb to my baby.

I'm 99% sure I have Celiacs but I need some confirmation help because I know it is easy to misread tests. You see, my new naturopath is out of town for a week and I kind of pressured the receptionist to fax me my bloodwork from my initial appointment a week ago because I didn't want to wait 2 weeks to find out if my anemia is better and how my thyroid is doing. I worked for years in a naturopathic practice as a medical assistant so I am familiar with basic test results.

I was shocked to see these high and positive numbers on the Celiac tests! I don't know much about Celiacs other than my research today and the obvious gluten-free diets that are connected to the disease. But now that I read about symptoms it describes me SO well.

Here are my results if anyone can help confirm.

Celiac Serology-

TT IgA- 129.6 H U/mL (>10.0 is positive)

Gliadin (Deamidated Peptide) IgA- 113.8 H Index (>30 mod to strong positive)

Gliadin IgG- 57.5 (>30 mod to strong positive)

Reticulin IGA antibody screen with reflex to titer= POSITIVE 1:40

Endomysial antibody screen with reflex to titer= POSITIVE 1:160

I also have low platelets, low vitamin D (I take 10,000IU a day!), low thyroid, low iron

Thank you for any interpretation/advice you can provide!