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Old 10-11-2011, 10:22 AM
 
3,651 posts, read 6,506,737 times
Reputation: 5526

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I had posted perhaps a week or so ago about sores in my mouth and bumps on my fingers and being desperatly sick. I wanted to just update and say I've been doing MUCH better. I started a Gluten free/dairy free diet and WOW. After 7 years of being so ill I spent 90% of my time in bed to suddenly taking 45 mins walks is just amazing. I went from having the most terrible vertigo to none at all in 3 days. My mouth sores are on the decline , I still have some but I don't expect results instantly and know this can be a long process (esp after 7 years) . I've also started some vitamin therapy to help. My only complaint still is some leg weakness (slight) and body "buzzing" at night, however I've been inactive for a long time so it might just be from me being able to move around more.

Tongue before


Tongue after
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Old 10-11-2011, 11:32 AM
 
Location: Mostly in my head
19,865 posts, read 57,982,807 times
Reputation: 19187
Wow! Glad to hear your result. So many people have gluten problems, if not outright intolerance/allergy, at least some intolerance that they don't even notice usually.
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Old 09-24-2012, 11:42 AM
 
1 posts, read 2,206 times
Reputation: 15
I am curious on how you are I to have identical what you have and I've been suffering for
4 years. I've had biopsies which is so painful I don't want another. All I get from drs is a shoulder shrug
And called a mystery. They can see the ulcers have taken photos but nothing. I've seen so many drs.
I had a positive ANA test so going to see the rhumetologist next month but
As I'm sure your aware it's PAINFUL. I could not find anything that looks like my tongue except
Geographic tongue. But my tounge is identical to yours.
I to have thought maybe an allergy to milk, it seems to get worse I think after milk products plus I questioned gluten.
Please if you have any new information can you pass it along. I'm in so much discomfort!!!
Thank you so much. Prayers to you!! Kristina
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Old 08-30-2014, 09:09 PM
 
3 posts, read 4,822 times
Reputation: 15
Didn't read all related responses, or all of your symptoms, but the ones I did see made me want to write to you. You may have already figured out the answer, but I am a physician with personal experience with lupus. Have you seen a rheumatologist about the possibility of lupus? If you have not, then you need to do so. If you have been tested and been negative for lupus blood tests in the past, please go back or find rheumatologist that you like and get retested every 6 months if your symptoms fit. Most will eventually turn positive if a lot of the appropriate specific symptoms are present and are not caused by something else. Also, celiac and it's antibodies are related to possible onset of lupus later in the course.

Best wishes to you and don't give up if you have not figured out what is wrong yet. Write all symptoms down, very, very briefly (the less words, the better). Go to the doctor and tell them in as few words possible that you are concerned about how long multiple, intermittent systemic symptoms have lasted, and that you really need help putting everything together. Then, let them run the interview. To get anywhere with this sort of thing with docs, they need to be allowed to ask all of the questions they need to, and they can't if the entire time is spent listening. That's why writing it down helps, then you can say ok, this is it in a nutshell. Now, what do you need to know from me? Patients sometimes don't understand that when we interrupt, it's because we know exactly what we need to find out after a very short time. And it is stuff that you cannot learn on the internet. That is why we have to torture ourselves with so much schooling. Most specialists wont put all of that stuff together for you. There is a saying in medicine, when you are a carpenter with a hammer, all you see is nails (in other words, a specialist only sees what they specialize in...except rheumatology...they are good at putting all of that multi-organ/system stuff together).

In today's medical atmosphere, where docs are supposed to be in and out within 5 min, then finish the chart, review and make 25 other possible life-changing or life-threatening decisions, fill out massive numbers of prior authorizations for tons of patients that we see and care for throughout each day, then go over every lab, imaging study, med list, and dictation we do, and make everyone happy, it is incredibly overwhelming. We have administration, who wants us to see more and more patients, in less time, and make ALL patients happy - while doing exactly what admin wants you to do, which makes patients very UNHAPPY. Then, the patients that are so ready to be disappointed and angry with us, and that have what I like to call a "hostile dependency"on us, it makes us feel trapped, helpless, and worthless. Not to say that this is anything compared to what the patients experience, but most of us got into medicine because we love our patients and we want to help...but the business of medicine sucks the very light, soul, passion, and beauty from all intentions and desires to help wonderful people like yourself. I pray that you are blessed and are able to find a kind, intelligent and compassionate doc that has not been branded and beaten by the horrors of modern medicine. Please keep us updated if you so desire. May you always have the best and experience happiness and love in your life

Last edited by Rockndoc69; 08-30-2014 at 10:07 PM.. Reason: More to say
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Old 08-30-2014, 09:13 PM
 
3 posts, read 4,822 times
Reputation: 15
Quote:
Originally Posted by Drcomplaints View Post
I am curious on how you are I to have identical what you have and I've been suffering for
4 years. I've had biopsies which is so painful I don't want another. All I get from drs is a shoulder shrug
And called a mystery. They can see the ulcers have taken photos but nothing. I've seen so many drs.
I had a positive ANA test so going to see the rhumetologist next month but
As I'm sure your aware it's PAINFUL. I could not find anything that looks like my tongue except
Geographic tongue. But my tounge is identical to yours.
I to have thought maybe an allergy to milk, it seems to get worse I think after milk products plus I questioned gluten.
Please if you have any new information can you pass it along. I'm in so much discomfort!!!
Thank you so much. Prayers to you!! Kristina
Possible Lupus or other autoimmune disease - go to rheumatologist, don't know all of your symptoms, but need to find good rheumatologist that will LISTEN to you...very important Best, best wishes to you
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Old 08-30-2014, 09:22 PM
 
3 posts, read 4,822 times
Reputation: 15
This is an a academic journal article for physicians - but the abstract states that it is thought that there is evidence that patients that present with celiac disease can later present with lupus. The antibodies that they test for in celiac can also be positive in lupus. If you are completely well now that you are gluten free, that is awesome! Keep it up and don't go looking for anything extra, but if not...talk to rheumatology and bring them the following article to ask their opinion.

Adult celiac disease followed by onset of systemic lupus erythematosus.
Freeman HJ.
Author information

Abstract
BACKGROUND:
Celiac disease has been associated with autoimmune disease (eg, autoimmune thyroiditis) and the appearance of different autoantibodies (eg, antidouble-stranded DNA). Conversely, tissue transglutaminase antibodies have been detected in autoimmune disorders, including systemic lupus erythematosus (SLE), but cases of celiac disease with SLE have been only rarely recorded.
METHODS:
In this study, 246 patients with biopsy-defined celiac disease were evaluated for a prior diagnosis of SLE on the basis of American Rheumatological Association-defined clinical and serologic parameters.
RESULTS:
There were 6 patients with celiac disease and SLE, or 2.4%, including 4 females and 2 males. Their mean age at diagnosis of celiac disease was 44.7 years and SLE 50 years. In all patients, the diagnosis of SLE was established from 2 years to more than 10 years after the diagnosis of celiac disease, with a mean of 5.3 years. The celiac disease in all 6 patients responded to a gluten-free diet with histologic normalization of the small intestinal biopsies. Despite this small bowel biopsy response, SLE appeared later in the clinical course of the celiac disease.
CONCLUSIONS:
This study suggests that SLE occurs far more frequently in biopsy-defined celiac disease than is currently appreciated, and detection may be more likely if the period of clinical follow-up of the celiac disease is prolonged.
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