Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
I'm seeing my primary care doctor tomorrow for follow-up. Some of you may recall I seem to be a ticking time-bomb for another autoimmune disease, either liver-related or RA, or perhaps more systemic. I last saw her in September after beginning the GF/DF/SF diet. Autoantibodies were still high then, but I really hope all these months on the diet will mean my ANA, Anti-Actin and Rheumatoid Factor are down to normal. I read an article yesterday about new approaches to treating autoimmune hepatitis, and realized it has a strong link to the DQ2 gene. I want to beleive it's all gluten-related, but maybe celiac is just one of the prizes you get for being DQ2. It seems most horrible autoimmune diseases happen to DQ2s - very depressing .
Last year there was also a good study showing that autoantibodies had a 95% predictive value in 10 years. In the case of RA, Rheumatoid Factor turned into active RA within 10 years for most people. So the old belief that perfectly healthy people walk around with autoantibodies -- and it doesn't mean anything --is actually untrue. It is a vital warning sign, a reason to start a prevention program ASAP -- although no one knows how to prevent these things. So all I know to do is stay with the GF/DF diet and avoid vaccines and other immune triggers.
The answers can't come fast enough for me. I'm tired of waiting.
That's interesting Zizzle.. A vaccine for a genetic predisposition. While I can see how a vaccine can train the immune system to attack a virus etc... How can that mechanism be used to deal with something like celiac disease.
I did not know about the RA link...
Another impressive Aussie discovery... Go Aussies !!!!!
Joe,
From what I can tell, the vaccine works like an allergy shot, telling the body to learn to "tolerate" gluten. It also seems harmless to those who don't have celiac, so I think it may be a great doscovery for all gluten-intolerant people, not just full-blown celiacs.
What I find interesting about the DQ2 gene is that it's been around a long time and hasn't changed in hundreds of years -- many genes mutate or alter over time. I think the article also mentioned it is dominant, so I guess that guarantees my kids have it. It comes from Northern Europe from a time when people ate no cereal grains. They lived on mostly shellfish and fish.
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
Interesting observation about the flaws in the vaccine -- maybe they are in bed with Dr. Fasano so the vaccine can cure 90% of people's intolerance, and his zonulin suppressing drug can take care of the rest?
As far as the allergy-shot nature of the vaccine, I'm guessing it's not as potentially dangerous as childhood vaccines, as there is no virus to grow on questionable media (eggs, monkey cells, human embryos, etc.) My other reason to go for it as opposed to other vaccines is my perceived benefit. Most vaccines aim to prevent rare diseases, ones that most of us are at little risk of getting. Others prevent diseases that aren't too dangerous or deadly (flu). This vaccine has the potential to change something that affects virtually every moment of my waking life. For that I'll accept some vaccine risk.
I just got back from a visit with my internist. She's very nice and aims to please. She wholeheardtedly believes I have celiac disease based on genetics and symptoms. She does not believe further testing is needed to prove it and does not believe blood antibodies are necessary to prove it either. That was a surprise. I last saw her in July shortly after starting the GF/DF diet. So she rechecked ALL my bloodwork (overkill if you ask me, but I'm not complaining). She's looking for signs of autoimmune activity beyond LC. She asked, "Are you prepared?...if any of these come back abnormal (especially the CRP or ESR)...you are headed for a major work-up, possibly CT scans, etc." I told her my hope is that the diet has drastically reduced my numbers, and that I was mostly there out of curiosity. She ordered:
CRP (C-reactive protein)
ESR (sed rate)
Liver and kidney function tests (looking for autoimmune hepatitis -- she was calling it celiac hepatitis by the end of my appt!)
Blood sugar (mine was low in the past, but I suppose I'm at risk of diabetes now too)
Vit D level
B-12
CBC (looking for anemia or other diet-related issues, lymphoma I guess) She actually mentioned lymphoma risks a couple of times...scary!
Antibody levels for:
ANA
Anti-Actin
Rheumatoid Factor
She asked what my GI ordered for follow-up. I said I wasn't sure, maybe a colonoscopy every 10 years, and she was fine with that (phew). I asked if she felt medication such as Asacol or Entocort were warranted in my case, now that the D is only 1-2 per day and not as urgent. I explained that when the D acts up, I can ALWAYS trace it back to something I ate. She said Asacol has more side effects than Entocort, but that both may have worse side effects compared to having tolerable levels of D. However, she was curious to know if stopping the local inflammation with meds would somehow stop the other forms of systemic inflammation I may have. She suggested I consult a new GI about it, one that works with celiacs.
We agreed that if my bloodwork was normal or much improved, we could do yearly follow-up instead of every 6 months. She wrote me scripts for my vitamins (multi, D3-2000 IU, cal/mag, B-complex) and Pepto, just so I could have my flex spending plan pay for them. I mentioned I might try accupuncture and she was very supportive. She said it can help with stress and it's effects on the body. Overall, very good visit.
Wow, that's a great doctor visit. I have no idea whether that's the right tests, looking for the right things, but the communication sounds exceptional. No thyroid worries, I'm glad to see. That's the kind of thing that makes me nervous... but how exciting, now that we share that special gene, to think I can add 'lymphoma' to my list! (Kidding, there actually isn't room on my list at the moment... kidding about that, too.)
I hope your guess is right, that the dietary lockdown has turned down the volume on your autoimmune/inflammatory markers overall.
It occurs to me that the difference between "having celiac disease" and "having MC symptoms and known autoimmune issues and gluten sensitivity and the celiac genes" is not a difference worth a lot of consideration. Actually, now that I've typed that, it occurs to me that when people say "celiac?" I'll just nod in a way that shows how impressed I am that they've heard of it.
I look forward to your results, and congratulations on the great MD teamwork you have going.
sarkin wrote:
It occurs to me that the difference between "having celiac disease" and "having MC symptoms and known autoimmune issues and gluten sensitivity and the celiac genes" is not a difference worth a lot of consideration.
S
You are so right. Rather than my long-winded "type of celiac of the large intestine" explanation, i think it's probably safe to tell people i simply have celiac. How can violent reactions from a crumb be anything else??
We did talk about all diseases connected to celiac and she mentioned thyroid. I have no symptoms and i've been tested 3 times over 6 years- all normal. She palpated my neck to check the size and said she wasn't worried about it. She said although it occurs often with celiac, it occurs with many other autoimmune diseases too, so she's not that impressed by the link to celiac. I explained that many seemingly non-related diseases (fibromyalgia, MS, diabetes and others , often improve dramatically on the GF diet. She was very interested to hear that. Hopefully she'll be more willing to suggest it to other patients now.
Hi Zizzle,
RE: your doc visit, I just had an auto-immune workup this week, and will be curious to see what that turns up. I do have signs of other stuff. What I fear most is lupus. I blood tested and biopsied negative for celiac, but have not had any Enterolab testing. Questions my doc asked indicated that she was trying to rule out hepatitis C, but she didn't say anything about any auto-immune hepatitis.
Also, I was so interested to hear your comment in another thread about having had mono. I had it in my 20s, and Gloria mentioned to me awhile back that she did too. I wonder how present that is in anyone else's history? The rheumatologist I saw for the AI workup basically pooh-poohed (UH, bad choice of words) any connection, saying that the majority of people have EB virus in their systems.
But, some reading that I've done, and I can't recall from where, so I can't cite it, referenced the increased risk of lymphoma (you also mentioned lymphoma, I think earlier in this thread) in patients who have had mono. Naturally, I wasn't pleased to read that.
Suze,
Epstein Barr is a suspected trigger in a number of autoimmune conditions, but it is true that many people have been exposed. I wonder if it lives on in certain people though, or if genetics (such as DQ2) play a role in it's ability to trigger autoimmunity. I just read a study this week about the link between Epstein Barr, Vitamin D and MS. In a fairly large sample they noted that a majority of MS patients had low levels of D AND Epstein Barr. They had to have both to make the association.
In my case, I've often wonder about my Hepatitis B vaccine series in college. The vaccine has been implicated in a number of autoimmune diseases, particularly among health care workers who are required to get the vaccine as adults.
I have not been tested for Hep C - I am extremely low risk - but I've been curious. I've read the baby boomer generation is particulary likely to have it (something about GIs being exposed, blood transfusions not testing for it back then, etc). If my liver enzymes do ever become abnormal, I will request this testing before doing anything more invasive looking for autoimmune hepatitis. In fact, I read an article the other day that many Hep C cases have been improperly labeled autoimmune, since they share many of the same disease markers and autoantibodies. Imagine years of treatment for the wrong disease??
I'm somewhat dissapointed that my doc keeps testing for the same things, instead of expanding the antibodies we are looking for. I wonder if new antibodies may have cropped up that may point in a new direction? I suppose I need to see a rheumy for that, and it's hard to get an appt around here with a decent one. 5 years ago a rheumy was ready to slap the lupus label on me (I had a malar rash on my face, an itchy rash on my body, and sky-high ANA), but the antibodies didn't pan out. My ANA was speckled instead of homogeneous, and I didn't have some of the other required antibodies or eleveated SED rate for a slam dunk diagnosis. I did have mild IBS and lactose intolerance back then, but celiac bloodwork was negative then too. The big D of LC hit a few years later.
As far as the risk of lymphoma, I'm not worried (famous last words). It's a risk in untreated celiac, but the risk virtually disappears on the GF diet, leaving life expectancy the same as non-celiacs.
The question for me is if leaving untreated GI inflammation (still having D despite the GF/DF/SF diet) makes other inflammatory conditions more likely. Mesalamine (Asacol HD/Lialda) or Endocort may quell the inflammation, but mesalamine in particular seems very toxic to the liver and kidneys, an area I feel I can't mess with. I sure wish I knew doctors with more definitive answers!!
Please keep me posted on your work-up and I'll share mine. I sure hope yours turns out normal.
Zizzle,
All I know is the list of bloodwork the rheumatologist is doing is about 6 pages long, and includes antibody and DNA. Plus, she wants x-rays of my hip and S-I spine. I'll definitely get back to you about it in June, which is when I'll see her for the followup.
Visit the Microscopic Colitis Foundation Website
all these months on the diet will mean my ANA, Anti-Actin and Rheumatoid Factor are down to normal. I read an article yesterday about new approaches to treating autoimmune hepatitis, and realized it has a strong link to the DQ2 gene. I want to beleive it's all gluten-related, but maybe celiac is just one of the prizes you get for being DQ2. It seems most horrible autoimmune diseases happen to DQ2s - very depressing 
.
