Still Feeling Like Crap?

[GlutenGuy36]

Hi was diagnosed with Celiac Disease July 14th 2008. I have been gluten free with a few accidents along the way. I am still feeling pretty bad even though the abdominal issues have abated for the most part. Some symptoms have gotten better but many still remain such as, radom body pains, feeling fatiged, tinnitus and just an overall not feeling well.

I have been taking sublingual b12, vitamin d, calcium, magnesium and zinc. I was just tested for luekemia two weeks ago because my Gastro Enetrologist said there really is no reason for me to be feeling this way still. I'm starting to get scared again even though I have had tons of Mris and cat scans to rule out anything like that. I have been as careful as I can be of cross contamination because I live in a house with others that can eat gluten without getting sick.

I have lost almost 30 lbs in the last year and 3 months since being on the diet. I guess what I am asking if there is anyone out there that is still not feeling well like me after this long of being on the diet?

I'm looking into nightshades that might be causing me alot of pain. Just frustrated beyond belief at this point.

[OliveBranch]

GlutenGuy,

I am too new to all this to be qualified to give advice, but I looked at your profile after reading this post, and so much of your story was familiar to me that I felt compelled to respond, if only to wish you well. I haven't been gluten-free for as long as you have, but I have been sick for just as long, and know what it's like to have your life robbed from you in this horrible way. I also have had to stop working as a result of illness (the intense fatigue, malaise, general pains, and brain fog were debilitating) and the frustration has been enormous.

I hope that you'll be feeling better very soon. If there's any other food that is keeping you from healing, I hope you'll find it -- but mostly, you deserve health, and I hope you are restored to yourself very soon.

Hi was diagnosed with Celiac Disease July 14th 2008. I have been gluten free with a few accidents along the way. I am still feeling pretty bad even though the abdominal issues have abated for the most part. Some symptoms have gotten better but many still remain such as, radom body pains, feeling fatiged, tinnitus and just an overall not feeling well.

I have been taking sublingual b12, vitamin d, calcium, magnesium and zinc. I was just tested for luekemia two weeks ago because my Gastro Enetrologist said there really is no reason for me to be feeling this way still. I'm starting to get scared again even though I have had tons of Mris and cat scans to rule out anything like that. I have been as careful as I can be of cross contamination because I live in a house with others that can eat gluten without getting sick.

I have lost almost 30 lbs in the last year and 3 months since being on the diet. I guess what I am asking if there is anyone out there that is still not feeling well like me after this long of being on the diet?

I'm looking into nightshades that might be causing me alot of pain. Just frustrated beyond belief at this point.

[ranger]

Sorry to hear your'e not feeling well, but glad youv'e seen improvement. Do you keep a food diary? It is helpful in case you have other food intolerances that could be impeding your progress, as many of us have. Do you ingest dairy? That's a problem that a lot of us also have. Sometimes, it just takes a really long time to heal. Hope you find the problem.

[ang1e0251]

What's a typical day's diet like?

Have you been re-tested for blood antibodies? It would show if you are still being exposed to gluten.

[GlutenGuy36]

What's a typical day's diet like?

Have you been re-tested for blood antibodies? It would show if you are still being exposed to gluten.

I haven't been re-tested for antibodies. He doesn't seem to think I need it. He just said remain gluten free. I am pretty sure that I am not consuming gluten. I use my own pans ( bought new ones ), I don't eat out at all anymore. Even at places where the food they serve maybe gluten free because they also serve food that isnt.

Can dairy make you feel really bad? I do have a little milk in my tea or coffe and a candy bar here or there that is about it.

[SGWhiskers]

gluten guy,

I too am feeling like you. I was diagnosed about a month after you. I'm also convinced there is another disease that hasn't been diagnosed, because while I feel so much better than pre diagnosis, I'm still struggling to get through the days. I rarely feel anything close to good. I've had my antibodies checked twice and they were back in the normal range with just one number off that went down dramatically between the initial and two follow up tests. I've quit blaming it on accidental glutenings. I'm with you about how frustrating it is. My new rhumatologist recommended the paleo diet and I started a week ago, but don't feel any change. I'm glad your doc is checking you for leukemia. Did you get the results? I got a rediagnosis of fibromyalgia last month. I'm still searching though because that has been an on and off diagnosis along with chronic migraine before I was diagnosed as Celiac. I beleive fibro may be a legit diagnosis for me, but I still feel the need to explore every other possibility in hopes of feeling better. I just wish I knew what was left to look into. I hope you find some relief from your discomfort. I find one Tylenol helps me get through the work day, but I don't know if it is OK for my liver. Have not run it past the docs. Best wishes, and if you find relief or a diagnosis, please post. Hugs.

[GlutenGuy36]

gluten guy,

I too am feeling like you. I was diagnosed about a month after you. I'm also convinced there is another disease that hasn't been diagnosed, because while I feel so much better than pre diagnosis, I'm still struggling to get through the days. I rarely feel anything close to good. I've had my antibodies checked twice and they were back in the normal range with just one number off that went down dramatically between the initial and two follow up tests. I've quit blaming it on accidental glutenings. I'm with you about how frustrating it is. My new rhumatologist recommended the paleo diet and I started a week ago, but don't feel any change. I'm glad your doc is checking you for leukemia. Did you get the results? I got a rediagnosis of fibromyalgia last month. I'm still searching though because that has been an on and off diagnosis along with chronic migraine before I was diagnosed as Celiac. I beleive fibro may be a legit diagnosis for me, but I still feel the need to explore every other possibility in hopes of feeling better. I just wish I knew what was left to look into. I hope you find some relief from your discomfort. I find one Tylenol helps me get through the work day, but I don't know if it is OK for my liver. Have not run it past the docs. Best wishes, and if you find relief or a diagnosis, please post. Hugs.

Hey SG,

Sorry you are dealing with this as well and I hope you feel better soon. I also have Hypothyroidism and a herniated disc in my back in addition to the Celiac Disease. What seems to make me feel the worst is just aches and body pains all over. I feel like I am 80 and I turned 37 this past Januuary. My luekemia test came back good so I guess that is a good thing. It's just a little disheartening to read how others feel better so fast. I will look into that Paleo diet as well. I was already researching the Anti Inflammatory diet which would help you if you have fibro or any type of arthritis. I wish you all the best and hope you feel better soon. -Ted.

[Northern Celiac]

I haven't been re-tested for antibodies. He doesn't seem to think I need it. He just said remain gluten free. I am pretty sure that I am not consuming gluten. I use my own pans ( bought new ones ), I don't eat out at all anymore. Even at places where the food they serve maybe gluten free because they also serve food that isnt.

Can dairy make you feel really bad? I do have a little milk in my tea or coffe and a candy bar here or there that is about it.

hey gluten guy, everyone i know has said depending on the severity of your celiac disease you caN be lactose intolerant. I used soya milk with my cereal and i cook with cow milk,cheese isn't too bad for me so I use quite a bit of it. One other thing I found that is quite helpful is keeping a journal of everything,what you eat, how ur sleeping.....etc

Best of luck

[Cindysilkid]

Hi there. I have been gluten free for a year now. My main lower ab stuff cleared up right away but my other symptoms haven't - extreme fatique, upper body gas etc. The remaining symptoms have been slowly getting worse. I recently found out that I can't eat night shades anymore and avoiding these has made some difference. I am starting the specific carbohydrate diet as I am sure I have leaky gut and hope this will help.

[YoloGx]

Similarly to you, I had to change my diet even more after a year or so on the full anti celiac diet.

What's helped for me is to go off all grains as well as potatoes, tomatoes, peppers, yams, sweet potatoes, nuts, all milk except 24 hour plus yogurt (home made) and of course all sugars. Due to too much candida tendencies I have also had to avoid all fruit except for lemons and sometimes cranberries. In addition I recently started taking olive leaf tea. Its really helping. Its good against all kinds of microbes, fungi etc. Often gets stuff traditional AMA medicine can't. It also helps against fibromyalgia like symptoms and general muscle aches etc. Something to consider.

If you decide to try it, its important to just take small dose of olive leaf to begin with. I got a huge Herxheimer effect that left me waisted for a couple of days. Felt like I was almost going to die there at first. Irritated my intestines and kidneys big time. But I used powdered marshmallow root (mixed in cold water), and made a tea of dandelion root, echinacea and cleavers and uva ursi and am now just fine. But I make sure I drink lots of water after having the olive leaf tea (now mixed with the above tea) and have a lot less amount of the olive leaf.

How I got into taking olive leaf to begin with is that I got a spontaneous ear infection from too much work and stress....The antibiotics didn't fully work and succeeded in irritating my kidneys and gave me D. So what a mess that was--since after starting to make me feel better (esp. against the ear infection) I got re-irritated and had D big time. Am glad I know so much about herbs or I wouldn't be here on the planet I often think to myself...

In addition, I have had to avoid all trace contamination from gluten. I mean All. Thus I avoid caramel coloring even in hand soap, will not kiss a guy even if he has whiskey that supposedly is "safe" (since for me its not!), always wash my hands before putting them to my mouth etc. etc. By being extreme it has helped me immensely even though some people think I am nuts. However what works works!! Hope this helps.

Bea

[GlutenGuy36]

Similarly to you, I had to change my diet even more after a year or so on the full anti celiac diet.

What's helped for me is to go off all grains as well as potatoes, tomatoes, peppers, yams, sweet potatoes, nuts, all milk except 24 hour plus yogurt (home made) and of course all sugars. Due to too much candida tendencies I have also had to avoid all fruit except for lemons and sometimes cranberries. In addition I recently started taking olive leaf tea. Its really helping. Its good against all kinds of microbes, fungi etc. Often gets stuff traditional AMA medicine can't. It also helps against fibromyalgia like symptoms and general muscle aches etc. Something to consider.

If you decide to try it, its important to just take small dose of olive leaf to begin with. I got a huge Herxheimer effect that left me waisted for a couple of days. Felt like I was almost going to die there at first. Irritated my intestines and kidneys big time. But I used powdered marshmallow root (mixed in cold water), and made a tea of dandelion root, echinacea and cleavers and uva ursi and am now just fine. But I make sure I drink lots of water after having the olive leaf tea (now mixed with the above tea) and have a lot less amount of the olive leaf.

How I got into taking olive leaf to begin with is that I got a spontaneous ear infection from too much work and stress....The antibiotics didn't fully work and succeeded in irritating my kidneys and gave me D. So what a mess that was--since after starting to make me feel better (esp. against the ear infection) I got re-irritated and had D big time. Am glad I know so much about herbs or I wouldn't be here on the planet I often think to myself...

In addition, I have had to avoid all trace contamination from gluten. I mean All. Thus I avoid caramel coloring even in hand soap, will not kiss a guy even if he has whiskey that supposedly is "safe" (since for me its not!), always wash my hands before putting them to my mouth etc. etc. By being extreme it has helped me immensely even though some people think I am nuts. However what works works!! Hope this helps.

Bea

Thanks Bea,

You are amazing with all of your knowledge. You give me hope when I feel like there is none and I really appreciate it.

[jerseyangel]

I had a very hard time getting well after going gluten-free. I had several other food intolerances that kept me sick--actually at times sicker than I had been before starting the diet.

I was very careful about gluten, didn't eat out at a restaurant for close to 4 years. What helped me was keeping a simple food log. I discovered I was sensitive to foods such as coconut, soy, dairy, and especially legumes. Legumes made me feel poisoned, literally.

I cut out the offending foods and adopted a simple diet. I felt better eventually, but it took probably a year and a half.

Recently, I cut out sugar and grains and I feel better than I have since, well, ever. I was even able to add back some dairy.

If you haven't yet, you may want to try an elimination diet and see if any other food proteins are affecting you.

[flourgirl]

Hi Glutenguy! You are far from alone here! Yeah...it is frustrating to read about so many who find relief right away. I have also read that some take years to feel well...depending on the amount of damage sustained. I was diagnosed in Nov. of '07. and am still struggling. I know that I am not getting glutened, and a lot of the problems I had have cleared up. I got so tired of tests and doctors, and more tests, and more doctors. White flag time for me! I now have a diagnosis of Fibromyalgia and Sjogrens. Big whoop. When I asked what to do for relief....my Rheumy threw up her hands and said...there's nothing I can do for you! I tried Lyrica for pain and for sleep (my doc swore it would be nirvana.....I guess it was if you like to feel drugged all of the time). That stuff went into the trash! I find that Ibuprofen and Aleve cause me a lot of problems, too, so they are for desperate measures when I reach the point of "I can't take it". ... which kind of defeats their purpose, as they work best if you take them regularly to prevent, rather than chase the pain.

Anyway....just wanted to let you know there are others of us here.....and I guess I vented a little myself. I wish you luck, and relief soon. I think if we just hang on, eventually we find answers and relief.

[gabby]

Hi,

I was gluten free for 2 years and while I felt better than at the beginning of the diet, I wasn't feeling that much better. Until I gave up dairy. I started feeling better within 3 days. After 6 months, I slowly brought dairy back into my diet and found that I can handle small amounts now with no problems. I never really consumed that much dairy to begin with: some in my coffee/tea, a little butter here and there, some plain yogurt once in a while. But it was enough to cause problems. Lots of people with celiac disease have trouble digesting dairy products until their intestines heal up...which can take from 6 months to a year (or longer for some). The key is to eliminate every speck of dairy: lactic acid, milk solids, cheese, butter, along with the obvious things like milk, yogurt, ice cream. I also found that it was best to just go without instead of using a subsitute for the first 6 months because I had quite a bit of problems initially with soy milk, rice milk, almond milk, etc. Things went better for me when I just took a dairy and dairy-substitute vacation.

Give it a try for a week or two and see if your symptoms get better. In the meantime, keep a detailed food journal including brands that you use, and maybe post a few days of your journal here so some of us old-timers can see if there's any hidden gluten creeping in.

Whatever road you choose, here's hoping you figure it out quickly, and with inspirational results.

Hope that helps!

[GottaSki]

Add me to the slow to heal group...had some improvement with gut issues within two months. I continue to have major fatigue, fogginess, joint and back pain.

Hang in there!

-Lisa