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First Post - Hello All!


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#1 fourleaf

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Posted 28 December 2012 - 07:29 PM

46 year old male here... floored by the realization that my deteriorating health over the last 5 years is possibly gluten related. But it all fits and reading everyone's stories is both daunting and hopeful if that makes sense. For me my symptoms seem to come in waves that I can divide by ages in my life.... some stay always, some leave. It never seems consistent and even with gluten in my diet I cannot reliably say that I always feel bad immediately after the food. Does this make sense?

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!
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#2 GFinDC

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Posted 28 December 2012 - 08:58 PM

Welcome to the forum 4leaf! It is worth trying gluten-free for a while even with negative tests. You can read the link on non-celiac wheat sensitivity below to see why. It talks about research published this year (2012) showing there are other immune system reactions to gluten besides celiac disease. And they can have similar symptoms. Since this is new stuff, they don't have a defined test process for it yet. Or know much about it for that matter. Most of us call it NCGI (non-celiac gluten intolerance). Celiac testing won't detect it. Here are some threads that may help in getting started on the gluten-free diet. Trying gluten-free is not going to hurt anyone, and it may just help. If you decide to give it a try, stick with it for 3 to 6 months. That will give you enough time to learn how to avoid hidden gluten, and also some time for your gut to heal and your body to adapt. Doing gluten-free for only a few weeks is not long enough as the immune system reactions don't stop until all gluten is removed for several weeks at least. So you wouldn't really get a good idea of how it affects you.

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 probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/


Non-celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
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

#3 GottaSki

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Posted 29 December 2012 - 04:21 AM

Hello Fourleaf!!!

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.
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-Lisa

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

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 mommida

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Posted 29 December 2012 - 09:40 AM

Welcome 4 leaf!

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 :ph34r: :ph34r: You might not experience it, but if you start getting any behaviour changes it's normal. You may become symptomatic to accidental glutenings :blink: 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. :D
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Michigan

#5 fourleaf

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Posted 29 December 2012 - 11:02 AM

Thank you all for your responses and words of encouragement. I went out to the natural market we have here in town and picked up some vitamins, enzymes and Flax seed oil (all gluten free of course) and will start that right away. Daunting to think that I may never have bread again but it's a small price to pay really if it means I will feel better. I have been slowly worsening with all these symptoms as I have gotten older so now is the time to commit. I am optimistic it will at least help some if not all of my symptoms. I also know that it will take months and I do NOT expect immediate results. But any positives will reassure me that I am on the right path. Again thanks a lot!!
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#6 mommida

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Posted 29 December 2012 - 02:04 PM

It is possible to have some very nice gluten free bred. Everyone seems very happy with Udi's. We can not have that because it has eggs in the ingredients. I used to make bread from the Gluten free pantry mixes. (Use a kitchenaid or other very strong mixer. Keep mixing until you see the paddle making grooves in the batter. Put into your pans and sometimes it helps to put the baking pan on its side during cooling.) If you really are picky about your bread and gluten free doesn't seem to compare to what you want TOAST or GRILL it for sandwiches.
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Michigan


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