New 'kid' saying Hi

[Sandy Beach]

Hello Everyone! I am so happy these boards are back! I was mostly a lurker on the ms and pd forums (since '97). After 25 years of chronic fatigue and 10 years of cns problems, I believe I may have Celiac. I say 'believe' because my m.d. has poo-poo'd my bloodwork....."we don't worry about numbers like yours, we don't refer folks to endoscopy unless their numbers are in the thousands...you don't have it "bad".......:eek: needless to say I must find new doc!! I have been gf for 1 month, with a couple of oopsies.....My older sister was dx 5 years ago so I am not COMPLETELY clueless about things.....I don't write much at one time....combo of brainfog and 1 finger typing....this little bit took an hour....Thanks so much for all you do here....hope I will feel well enough to contribute someday....Sandy:)

[jcc]

Hi! It is nice to meet you!

Thank you for making the effort to connect here, in person.

Keep reading along, and check out The Gluten File (now on its own website), and ask any questions you have. Of course, I am interested in what your lab work says, but I agree no matter what that with your symptoms and a sister with diagnosed celiac disease...that you are making a smart move going gluten free.

For some people, especially those who have been suffering a long time, the progress can be slow. Hang in there~

Cara

[annelb]

Yes, it is nice to have the forum back up and running.

I too am curious about your blood test results. I wonder how the doctor treats diabetics - hope he doesn't wait until the numbers run in the thousands :eek:

Have you noticed any difference with the GF trial? I do hope it is helping. You may want to check out the vitamin B12 and vitamin D sections of The Gluten File too.

Thanks for posting - hope to hear from you again soon.
Anne

[Sandy Beach]

Hi Cara and Anne, Thanks for responding! This dr. never gives numbers willingly, I had to insist.....the bloodwork that was "off" was the iga autoantibodies...normal values are 1-19, mine was 59....I told him I have avoided gluten such as bread and pasta for several years but am not gluten free....his suggestion was to "pig out on bread and cake for 6 months and we would retest if I had big numbers then"......:eek: :eek: :eek: If he had said 2 weeks I MIGHT have considered it.....But I am so debilitated right now I simply can't imagine making myself worse...... I also have horrible rashes no one has been able to identify for many years....so I am thinking I will have the next outbreak biopsied for dh and if possitive I will have my answer then......so I am dr. shopping in southeast Mass. if anyone has suggestions........I am happy to answer any questions ....have a great day! Sandy

[jcc]

hmmmm....

I am still left wondering if they are the antigliadin IgA antibodies or anti-endomysial antibodies, or anti-tTG IgA antibodies.

If ANY of those were positive...they are NOT insignificant!! Not by a long shot. Even if antigliadin antibodies, the antigliadin IgA antibodies are more specific to intestinal involvement (unlike the antigliadin IgG antibodies, which are considered non-specific to celiac disease (gut part), but may be important in regard to gluten sensitivity and non-gut problems).

That in combo with your symptoms and a sister who has been diagnosed... I think you know enough already.

Cara

[annelb]

Under HIPAA the doctor has to allow you access to your records and give you copy of your records. http://www.hhs.gov/ocr/hipaa/consumer_summary.pdf

Sounds as though you have removed the "big" gluten from your diet. Have you noticed any difference in how you feel? It may take a totally GF lifestyle to make a difference. Have you looked at The Gluten File - there is a link under Cara's name.

I agree with Cara that a positive IgA test for celiac disease is significant. It all depends on how much proof you need to make the jump into going 100% GF. I have met people on both extremes. There are those who say they will not go GF unless they have a positive biopsy and there are those who say they feel better GF and that is enough proof for them. It is nice that we do not need a doctor's prescription to live gluten free.

Getting the rash biopsied may give you the answer. Make sure the doctor takes the normal looking tissue next to the rash.

Anne

[diamondheart]

Sounds like you have the information you need. You don't need a doctor to tell you to go gluten-free. Give it a try for a month, and see how you feel. You can also get tested through Enterolab (http://www.enterolab.com) for which you don't need a doctor's order.

Claire

[Sandy Beach]

Hi Folks, I am glad I finally have a moment to respond...busy week here trying to prepare for winter..it is getting cold! I am hoping to have my first good winter in 48 years! I have been almost gluten free for just over a month now, just a couple of tiny mistakes discovered after a bite or two :eek: I actually feel pretty good! I gave up my provigil:( and I think I am over missing it.....just one of the ways I was poisoning myself daily ....I have lost 10 pounds of stomach bloat, my "IBS" seems to have disappeared, my scalp rash is 95% better....I have also been doctor free haha...I have bought a gf multi-vitamin and take a super b complex......My spirits are soaring higher every day:D Finally an answer!!! ( albeit unnofficial ) I do understand it could take a long time for real results, I am in it for the long haul! The info you good people have compiled may literally have saved my life:D When my sister was dx'd five years ago I had asked my doc if I should be tested...he looked in his notes and says, No, you don't have Celiac.... I foolishly thought he was looking at test results, .....this summer I asked if I could be re-tested and learned I had NEVER BEEN tested.. five years later here we are.....25 years of chronic fatigue is gonna get it's ### whipped!!!! Have a gret evening everyone, Sandy

[annelb]

That is wonderful you are feeling better. Yup - sounds like you are on the right road. :D

Three years ago I thought I was dying. My heart doc was about to do a cardiac cath to be sure there were no new blockages. I was exhausted and felt so old. GF brought back my life and even more.

Watch out for other food intolerances. We are not sure why they seem to appear after going GF. My theory is that gluten was so overwhelming the system that the other intolerances were hidden until gluten was removed. That is only MHO :rolleyes: I have an obvious reaction to yeast. Enterolab testing was positive for eggs, soy and casein.

I hope you have a great winter :D Let us know how you are doing.
Anne

[valeriemates]

......so I am dr. shopping in southeast Mass. if anyone has suggestions.....

I have a relative who sees Dr. Alan Leichtner, in (or near) Boston. My relative says that he is a world expert on celiac disease, and she's happy with him. I don't personally know him, but I've been impressed by the things he's said that my relative has repeated to me.

-Valerie

[valeriemates]

Oh -- for me, brain fog turned out to be due to a folic acid deficiency. I started taking folic acid for other reasons and my brain fog vanished -- which was a huge relief!

-Valerie