32 replies to this topic

[GottaSki]

LOL...I've suggested that a full digestive system transplant would be a wonderful idea one too many times...last time hubby said with my luck I'd end up with the Big D, rather than C

[KikiB]

starting out, i eliminated dairy (for 6 months) and anything irritating (like nightshades, fruits/acidic things) so that helped. after i healed a little bit, i reintroduced them with almost no problem. i have trouble with soy (mimics glutening) but it isn't residual like a glutening. if i feel achy, tired, irritated, bloated,etc - it only lasts for a day. so i avoid soy (all these things are easier to sort out by keeping a food journal) dairy: makes me tired to digest it sometimes - i know, it sounds wierd - i feel like lying down for 30 minutes after i eat meals with cheese. you will find your own way and (like others have said) find your rhythm. i have food with me at all times, but i have been more relaxed about foraging if i need to. ie: you can usually find a bag of potato chips that are safe, fruit juice, etc.. i almost never eat out at restaurants and if i am going to a gathering, i will bring my own meal. (most times i just throw leftovers into a container, or a sandwich/veggie sticks and i make my own ranch dressing) i found these nifty neato containers with separate compartments to keep things from getting all together (china-mart i think they were $3.50 for 2 and also came with plastic fork and knife) sometimes at the beginning of the weekend i will pack them both so they are ready in case i want to jump in the car and do whatever. if i don't eat them on the weekend, then monday i eat em for lunch or whatnot.

anyway, i am rambling hang in there - i know the little voice that says: maybe the tests were wrong. maybe it's not celiac at all. maybe this is all a waste of time.....

well, it's not - it just takes a very long time for some people. don't forget that your body wasn't absorbing nutrients. there's a whole lot of things that are damaged/out of whack that need to be healed as well. welcome to here.

Can you share your ranch recipe?

[notme!]

(it is from allrecipes.com - i couldn't get the link to post anywhere but facebook lol) - i use it as a guide - i adjust it with yogurt, fresh chives,, dill and herbs when i have them. tastes best when you make it the day before - keeps in the fridge probably longer than i should lol
INGREDIENTS:
1 cup mayonnaise
1/2 cup sour cream
1/2 teaspoon dried chives
1/2 teaspoon dried parsley
1/2 teaspoon dried dill weed
1/4 teaspoon garlic powder
1/4 teaspoon onion powder
1/8 teaspoon salt
1/8 teaspoon ground black pepper
DIRECTIONS: 1. In a large bowl, whisk together the mayonnaise, sour cream, chives, parsley, dill, garlic powder, onion powder, salt and pepper. Cover and refrigerate for 30 minutes before serving.

edited to say: if i was ambitious,, it would be pretty easy to mix all the dry ingredients and keep in a jar then just add my (yogurt, mayo, sour cream, buttermilk, etc)

[WendyLee]

Well Chaps, I failed miserably at the SCD. By day 3 I was so sick I couldn't eat a thing, day 4 I was a crying mess. My neighbour phoned to see how I was and I blubbered in her ear that this diet just wasn't for me but I was so far down I didn't know how to climb back up. She said "hang on, I'm coming around".
She arrived with a culture of kefir, some raw milk, brown rice and a book called "Nourishing Traditions". Told me I'm to have some kefir everyday, even starting with a teaspoon would do, red meat, leafy greens, oil and vinegar on them, cook in butter/lard not oil......so essentially a primal/paelo way of eating. I'm to soak the rice overnight before cooking it, all nuts and grains have to be soaked before eating.
Well I don't feel any better but at least I'm eating again. Lost 5kgs in 4 weeks. Still no appetite........damn.
I'm a bit worried about the lactose in the kefir and have googled it. Seems there's some debate as to how much lactose is left in kefir after 24-36 hours of fermenting.
My neighbour bought her husband back from the edge of death last year with this diet. His gut was dead from massive infusions of antibiotics for infections all through his body. He gagged just thinking of food which was most unlike him, he loves food! He's been a para since the age of 4 (now 65) and he's looking the best I've ever seen him. Took months but she was able to restore his gut flora using the kefir she believes and a really good diet of fresh food and red meats for the iron. Eat nothing that goes through a factory, she said.

If the nausea would stop, I would feel a lot better about everything!

Off to have a Complex B shot this morning to see if that does anything. Gave myself a B12 last week and that didn't do anything but then my bloodwork shows my B12 levels are normal.

Sent hair samples off yesterday for analysis, be interesting to see those results. Now have chunks of hair missing from the back of my head

I feel I need to be allergy tested for what foods I could be reacting to, might make my life around food a bit easier.

My Doctor has suggested some supplements from www.advancedbionutritionals.com. "Integrated Digestive Formula", "Advanced Probiotic Formula" and "Advanced Adrenal Factor" after my standing BP dropped to 85/71. Anyone know of this company and their products? I live in Aussie and this is an American company I'm not familiar with.

So here I am, sitting in my rocker at 0800 in my PJ's waiting for the Ativan to kick in to quell the nausea a bit so I can shower then eat goodness knows what? Probably a berry smoothie with almond milk and kefir. Wonder how a raw egg would go in that for protein?

[WendyLee]

LOL...I've suggested that a full digestive system transplant would be a wonderful idea one too many times...last time hubby said with my luck I'd end up with the Big D, rather than C

LOL Yep I'd line up for that at the moment!

[WendyLee]

I was the same way. I did the GFD (absolutely no cheating ever!) for a year and it STILL didn't work for me. So I resorted to the specific carbohydrate diet about 2 months ago...and saw big results in the intro diet especially...I'm still tweaking it to fit me. Haven't finished through all the phases yet. Hang in there! Looking forward to hearing good results

I'm so pleased that the SCD is working for you so far. I couldn't get passed the Intro diet before jumping ship. I have no resolve left in me to push myself through the bad bits. Everyday is a bad bit I'm having trouble getting steamed veggies down my throat, leafy greens and raw carrot, no problem. Will try again but leaving out the intro diet. So all the very best for you, hope you come out the winner!

[WendyLee]

It takes time, longer than 8 months even to fully feel good again (it took me about a year).

This what the doctors aren't telling me. I read on another post that it took the poster 2½ years! Damn. I feel like going back to Dr Wenman, the gastro guy and telling him to stop glossing it over, give us the truth.

[KikiB]

(it is from allrecipes.com - i couldn't get the link to post anywhere but facebook lol) - i use it as a guide - i adjust it with yogurt, fresh chives,, dill and herbs when i have them. tastes best when you make it the day before - keeps in the fridge probably longer than i should lol
INGREDIENTS:
1 cup mayonnaise
1/2 cup sour cream
1/2 teaspoon dried chives
1/2 teaspoon dried parsley
1/2 teaspoon dried dill weed
1/4 teaspoon garlic powder
1/4 teaspoon onion powder
1/8 teaspoon salt
1/8 teaspoon ground black pepper
DIRECTIONS: 1. In a large bowl, whisk together the mayonnaise, sour cream, chives, parsley, dill, garlic powder, onion powder, salt and pepper. Cover and refrigerate for 30 minutes before serving.

edited to say: if i was ambitious,, it would be pretty easy to mix all the dry ingredients and keep in a jar then just add my (yogurt, mayo, sour cream, buttermilk, etc)

Thanks!

[Sillyred]

Just wanted to say thanks for all your posts! I am the spouse of a newly diagnosed and he too is struggling to heal. Good luck to everyone.

WendyLee, how's the SCD going?

[obesiac]

This is a very important post. I'm undiagnosed 40+ yrs and I'm 2 yrs strict gluten free and am still not feeling "normal" although improved alot. Had a lot of depression and still some fatigue. My most scariest problem is brain fog ( I believe brain damage ) . Yes some of it could be age , I am 50. Memory, difficulty learning new things, A couple of driving mistakes ( this hasnt happened in a while , thank god) and low confidence.

[Kathy59]

To everyone here: please do not give up...I have been where many of you are...I am feeling better, but it has been a long, uphill battle! My first words...do not be so hard on yourself...second, accept your new normal. I have also had and suggest bloodwork to check your viral levels. Seems like every virus I had ever been exposed to was active in my body. This is because your body attacks the gluten and all the good guys keeping all those other bad viruses are called in to fight the gluten. In my case the viruses attacked my cns causing nerve damage....it has been almost 3 yrs now...steady as she goes...I am not 100%, probably never will be, but I am sure better than I was 3 yrs ago...laying on a couch unable to stand the touch of a sheet against my body, drugged out on narcotics because drs were not treating nerve pain....I still take anti-viral meds, cymbalta and celexa for nerve pain, baclofen for muscle spasms, and a host of supplements; however, I was taking main meds 4 times a day and now down to 1-2 times a day. Recently, cut back on supplements...yes, I still have good days and bad days...but, I rest on the bad days....and it is not always possible, but I know when I have to push through...I will be resting...no more, pushing 24/7...

[TTNOGluten]

I have not posted anything in quite awhile, I guess I just need to vent again. I am have been looking for that miracle of health for 1 1/2 years and according to Gi doc, he really doesnt know why I feel no better. I have been strictly gluten free for this time frame, and according to my last few sets of labs my TTG Iga has been back to normal and my biopsies are normal, at best the only thing that has improved is maybe some bloating, but I still have 24/7 deep aching in my upper adbomen that feels like a constant knot. It hurts so bad that most days I have a hard time functioning and maintaining my job, and pain radiating straight through into my back, and now daily joint pain. Almost feels like someone is pushing their fist into my upper gut or twisting it??
Anyone else with these symptoms? My bloating seems to intensify at times, but the pain in relentless. I have had nearly every scan, xray, 24 hour probe etc. and find it hard to believe that it is related to food ingestion of other intolerances as when I limit them or stop them, it never goes away, it is almost like my gut is permanently damaged, but according to EGD it has healed on biopsy and labs are normal??
I don't get it at all. Still desperate for any type of answer.
Any input would again be helpful? I can't honestly somedays imagine that I can continue to live like this for much longer

[GF Lover]

The pain high in your chest and through to the back is very typical of acid indigestion. It can be in the stomach and climb into the esophageal area. Have you looked at spicy or acidic foods to see if they might be the culprit.

I hope your able to resolve it soon

Best of luck,

Colleen

[TTNOGluten]

I really do not eat any spicy or acidic foods, I have had PH probe testing acid and they say everything is fine, this doesnt really burn , it is like someone is putting their fist in my but and I have extreme mid back pain into my right flank, gallbladder is out, last EGD 6 months ago they say is OK, pain is incredible, constant, relentless pressure twisting sensation. Worse than 16 broken bones that I have had in my life, if that puts it at a level. No diarrhea, bowels pretty normal, doesn't feel like a crampy upset stomach

[GF Lover]

Okay. Two things I have had in that area are periformis syndrome. This is the muscle that runs across the top half of you butt. Hurts to hold a position long and hurts to change that position. Sacroilitis can go along with the periformis thing. They can both be aggrevated by muscle strain and inflammation. they can also send the pain going up to mid back, that could be a degenerative disk. Sacroilitis alone could send pain down the hips/legs.

Worth some investigation,

Colleen