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How Many Of Us Assume A Gfd Will Fix It?
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When I was diagnosed back in Feb by my Doc & Specidlist, they both patted themselves on the back for a result and, in an almost cavalier manner told me to hit the GFD and in no time at all I will feel heaps better.

Eight months later and I am still waiting to feel better. Some of us don't respond and that leaves us shattered to say the least.

I mistakingly believed I would be one of the early responders and when that didn't happen, depression took over.

How many others are there who have failed to respond to a FULL GFD , without cheating ;o). Have you found ways of overcoming that and what were they?

I've started the Specific Carbohydrate Diet today, beginning with the intro diet.

Fingers crossed

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

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I certainly remember the disappointment that came when removing gluten was not the entire answer for me. I was so thankful to finally have a diagnosis - my family and I were thrilled to be able to improve my health by simply removing food. Well we all know it's not simple to remove all gluten - but it is definitely do-able. Then to have some digestive improvement, but worsening fatigue, pain and brain fog and first follow up endo at one year gluten-free showed more damage (despite no celiac antibodies and improved nutrient levels) was beyond frustrating.

I do not think we are the rule - many folks diagnosed with Celiac Disease remove gluten, heal within months and are off living their gluten-free lives. This will be us one day as well - we just need more time and effort to get there. Think about this - there are over 50,000 members of this board - a large percentage of these come to learn what it means to live gluten-free and then return to healthful lives - perhaps checking in from time to time.

If you are not seeing expected improvement - removing other possible intolerances is a very good idea. SCD, Primal, Paleo are all great ways to go. The important and often difficult thing is to find which foods are causing you problems and remove them -- then trial them at six month intervals as many of these healthy foods can be eaten once intestinal healing is complete.

I hope you improve very soon!

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When I was diagnosed back in Feb by my Doc & Specidlist, they both patted themselves on the back for a result and, in an almost cavalier manner told me to hit the GFD and in no time at all I will feel heaps better.

Eight months later and I am still waiting to feel better. Some of us don't respond and that leaves us shattered to say the least.

I mistakingly believed I would be one of the early responders and when that didn't happen, depression took over.

How many others are there who have failed to respond to a FULL GFD , without cheating ;o). Have you found ways of overcoming that and what were they?

I've started the Specific Carbohydrate Diet today, beginning with the intro diet.

Fingers crossed

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 :)

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I am here in the several months and ailing place. I just had a food intolerance test and found nearly all the foods I eat are a problem. No wonder I am lacking in energy. Now I am dragging myself into a rotational diet. But I am not quite ready to start yet. But in the mean while I am trying not to repeat foods and am eating fish at lunch. All of the meats that I have been eating, except for beef, I was not intolerant to! Yeah, I always have high hopes and my head clears, until I crash into the next canyon. So today I am feeling a little better after 4 days, but I am trying not to get giddy excited, because it just isn't that easy after 30 years of trouble.

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I had been meandering along, dealing with lactose intolerance, the old IBS diagnosis, sudden dives for the restroom, bloating, gassiness. Then I developed what was initially diagnosed as RF negative rheumatoid arthritis. Decided to give up gluten to see if it helped because someone I know eats gluten-free for his AI ankylosing spondylitis. Three or so months later I found myself with itchy, bumpy rashes, non-itchy red flat rashes, hives in various places, all things I had never had before except for a hive reaction to paper tape. The good folks on this board talked me through the elimination of soy, I gave up corn because it was doing what gluten used to do, and eventually I found out that the hives were coming from nightshades (slow learner :P ) Legumes were added to the list later still, and eventually included green beans and peas too. So it was a slow, evolving process. Remove one thing and another raises its hand "Excuse me, Miss, what about me?"

I discovered lectins as a food problem for me (causing fainting I had been experiencing for many years, and then heart arrhythmia) and that was in part what led to the avoidance of the legume family.

So this whole food intolerance thing is a journey. Some folks are lucky and the elimination of gluten does the trick; others of us have to dig deeper and for longer.... :(

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Remove one thing and another raises its hand "Excuse me, Miss, what about me?"

Nothing further to add - just had to highlight this gem :D

Here's hoping everyone's problem foods are this polite - Cheers!

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i have been living gluten free for over 2 years now. i am still healing!! so, yes, it does take this long - the reason i know i am still healing is because i continue to improve (even though there are still 'bad' days, they are nothing compared to where i started) i can even navigate 'punctuation' without my hormones completely messing up my system (2 months in a row!)

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.

ps - i was eating a very clean/healthy diet before my dx so maybe it was a little easier to make gluten-free adjustments. it's like my body "knew"...... wierd......

o and pps - monitoring vitamin levels is a good idea - i had no clue that i was 'd' deficient and supplementing it has made a huge difference.

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I went gluten-free and my symptoms lessoned. Then I noticed I was reacting badly to soy, then dairy, corn, peanuts, acidic foods, spices, high sugar content, the list keeps growing. I just dropped rice so now I'm grain free.

I recommend keeping a food diary and log any symptoms you have. It's a good idea to drop dairy for a while, and I read on Mercola's site today that soy should be dropped too. We are all different, and I guess if we are intolerant to gluten, it's not a far stretch to have other intolerances too? The trick is finding what yours are.

Once completely healed many foods can be added back.

I'm beating the drum about GMOs too. Avoid them if you can. GMO foods are soy, corn, canola, cottonseed, sugar beets, papaya, and zucchini and yellow squash. Organic foods are less likely to have pesticide residue too, which can tear up a sensitive systyem.

Have you read the thread about Nettle tea helping a lot of us? Maybe try that?

I just read that Hawthorne berry tea calms a stressed digestive system too. I haven't tried it yet though.

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I hear you!

I so thought (or wanted to think) I would be like those people we read about who tried going gluten-free and two weeks later felt sooooo much better... alas, I am NOT one of them. :(

I guess like the pros here say, it's going to a matter of patience and trying different things as we heal.

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It took me more than two and a half years on a very strict gluten free diet before I really started to feel better. Some people just take a while to heal. My specialist says it is not uncommon.

The one thing I probably should have done differently was be a bit kinder to my intestines while they were healing. I should have ditched coffee and alcohol and stuck to things that were easy to digest. I think an SCD diet is probably not a bad idea for a while.

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I was hoping going gluten-free would solve all my problems... it didn't and I was a bit disappointed. I already knew I had issues with lactose. No biggie there. I'm discovering a problem with nuts that I didn't notice before, but otherwise I have been lucky and haven't found more intolerances. I don't eat much processed foods but when I do, I note that my stomach is less happy... that makes sense since processed foods are less like real food. LOL I eat them as treats.

My main complaint is other AI disorders that were causing other symptoms. The overlap of symptoms is really annoying. For example, I get some good hair regrowth and then my thyroid acts up or it's some other AI flare and it falls out in clumps. My stomach is way better but C didn't improve. Migraines decreased hugely but my fatigue hasn't been touched... I guess I'm lucky that my celiac responded pretty well but other issues are more obvious now...

I want a full body transplant! ;)

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Yes they do like to say you are all better now. See you in a year. Keep asking questions on here and people will answer them. This is a good place.

Try the dairy idea. I was doing fine without it the last few weeks and decided to try some last night. Big mistake, up all night. But I am a little more sure the dairy is the bad guy. :)

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I want a full body transplant! ;)

It's called reincarnation :D

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It's called reincarnation :D

LOL I better behave better!

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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 ;)

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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? :)

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(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)

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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? :huh:

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

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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 :blink: 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!

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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.

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(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!

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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?

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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.

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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
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