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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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