First Post - Hello All!
Posted 28 December 2012 - 07:29 PM
Childhood- chronic abdominal pain. I can remember having to walk around vigorously just to keep my mind off the pain. Don't remember bowel movement issues though... Also had recurrent aphthous ulcers (hated those things, man they hurt!) Always gained weight and grew... otherwise healthy. Until I awoke one day with parotid glands that were the size of softballs!! No diagnosis ever given... but it seemed to resolve. I think now it was all related.
Adolescence- IBS type symptoms ALOT...mostly gas, cramping and diarrhea, but had normal times too. Started with a rash on my scalp that has been a chronic life long thing (unfortunately). Best described as very itchy, painful, burning pustules scattered in various locations. They eventually scab up but take days and my glands (behind ears and back of neck) swell and are painful too. This recurs alot sometimes and then less other times (no pattern I could ever see). Controlled with Tetracycline, Minocycline, or Bactrim chronically. Eventually the antibiotics would stop working. went on Accutane (in my late 30's) and this helped immensely but they came back when I stopped the Accutane (and unfortunately the Accutane ( I think) contibuted to some difficult GI issues too (see below). The weirdest symptom of all involved my urination. It's been so long I really can't remember how it started, but I noticed that I did not pee in a straight stream anymore...it sprayed or split. Otherwise I had no urinary issues. No infections... Maybe some intermittent burning, but that lasted only a few minutes. Had complete evaluation with scope and all (that was fun) with NO diagnosis. ( a recurring theme in my life... complaints that ARE REAL and no positive tests or Diagnosis).
Early adulthood- continued intermittent cramping and diarrhea, continued scalp rash and continued urinary issue ...then blood in stools diagnosed as Ulcerative Proctitis. This was controlled easily with topical agents (suppositories/enemas). Seemed well controlled. Had a second bout of unexplained parotid enlargement (gone in 3 days). It hurt but then subsided.
Present (last 10 years)-- started with frequent sinus infections. I never had these, but now I could not just get a regular cold.... it would linger and I would need antibiotics. After one of these episodes I developed C diff. colitis. Responded slowly to several different treatments. Months later I started with more blood, mucous in my stools and was diagnosed with ulcerative colitis (mild per my GI). This got cleared and I continue on maintence meds today. A year later my GI tract seemingly "shut down". It would make very loud rumbling noises but it seemed like nothing would move. I was always bloated, full and very constipated. Sometimes I could only go with suppositories or enemas. I was scoped again and even had a biopsy for celiac which was negative. Blood tests also negative. Empirically went Gluten free (but likely not fully as I did not know what I was doing). Seemed better but that was 4 years ago and I really cannot remember anymore. All my GI symptoms my whole life have been intermittent. I would have days that I would be OK but then others where I would be miserable. Lastly, I now have (over the last 2 years) new bladder symptoms where I feel that I have to go all the time, feel bladder fullness and feel like I Really, really have to go when my bladder is just normally full. This has been the worst truthfully as it has led me to serious bouts of dispair. Only now does it seem to be getting better Thank GOD
I also have been fatigued alot more lately and have had various muscle/joint pains (not serious just a nuisance). Still have the dreaded scalp rash too... it's all enough to make a sane guy not so sane after awhile. But I am still hopeful and convinced (despite all my specialist's feelings) that it is ALL related to an underlying autoimmune process... and I think gluten is the possible culprit. Sjogren's (blood test negative, no salivary biopsy done), IC (recent scope did not show anything but am slowly better with Elmiron) and celiac tests have all been negative but I KNOW THAT IT IS ALL TOO COINCIDENTAL.
So... next stop... significant diet modification. I pray that it helps ALL my problems. Looking at Gluten free vs Paleolithic vs specific carbohydrate diet. Looking for guidance I guess... a friendly cyberspace voice or just a "Hello". Not sure what I hope to really accomplish with this novel I just wrote!
Posted 28 December 2012 - 08:58 PM
Some starting the gluten-free diet tips for the first 6 months:
Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid sugars and starchy foods.
FAQ Celiac com
Newbie Info 101
Non-celiac wheat sensitivity article
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
Posted 29 December 2012 - 04:21 AM
Paul has provided excellent info.
I just wanted to say welcome and you have landed in the perfect spot on the net. Many of us - even with positive blood and biopsy have walked a similar path to yours -- sometimes crawled
Since all the testing your doctors have run are "normal" removing ALL gluten is a great place to start. Some of us with many AI symptoms have to remove other foods, but I do recommend starting with removing all sources of gluten as it can be the only thing necessary to remove -- I generally suggest three months - six is better -- especially with autoimmune symptoms -- GI symptoms improved in me but the AI stuff got worse during my first six months.
Read all you can, ask lots of questions - eating simple whole foods is a healthy move for anyone - and IMO essential for those with any autoimmune concerns.
Good luck to you
PS...I forget...did docs run all your nutrients? It is wise to check All Bs, D, K, Iron, Ferritin, Copper and Zinc along with a CMP to see if you need any supplements - many with NCGI an celiac disease are deficient in many nutrients until we heal and start absorbing our nutrients properly.
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE -- probable cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
10/25/13 - MCAS - symptoms plus positive Prostaglandin/N-Methylhistamine - trialing combos of H1, H2 and Mast Cell Stabilizers
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
Celiac.com - Celiac Disease Board Moderator
Posted 29 December 2012 - 09:40 AM
Print out a copy of your "novel". In about 2 years on the gluten free diet, compare to see how many symptoms have resolved. Keep a food journal! It can help find hidden gluten, cross contamination, and other food intolerances.
I do want you to be aware of some things about starting a gluten free diet. There can be a "withdrawal" phase You might not experience it, but if you start getting any behaviour changes it's normal. You may become symptomatic to accidental glutenings Your tastebuds will adapt to gluten free foods in about 4 months gluten free. Don't waste time or money buying gluten free substitutes just yet. Just stick to foods that are just naturally gluten free.
You have a whole lot of gluten free support here! cyber ((HUGS)) for you. Sometimes our group can get their panties in a knot, but most of the time itt's a great place.
Posted 29 December 2012 - 11:02 AM
Posted 29 December 2012 - 02:04 PM
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