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5 Months Gluten-Free And Still Tired, Inspire Me To Stick With It Please!


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#1 Twizzel

 
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Posted 02 July 2011 - 09:57 AM

I have been attempting a gluten free diet for a little over 5 months now. I (think) my energy levels are higher. And within a few days, I could tell i wasn't having loos stools anymore. But today, for instance, I am so tired I can't even perform at work. I had to go home to sleep. I feel like a failure in life, I am so sick of being tired for everything I do. I am so sick of being the hypochondriac tired guy. I was wondering if peraps I accidentally glutened myself, but I keep looking back on waht I ate and I dont know (i had eggs on someone else's cast iron grill maybe?) Its so hard to tell. My real question for this post is this though:

"How long do people take to get energy back? Can it take 6 months to get only a small bit of obvious difference?"

What makes this time harder for me, is I am not officially diagnosed Celiac. Its hard to get my wife and family to stand by me with no results and barely any proof. 5 Months ago my blood tests actually came out negative for Celiac. I was on the diet for 2 weeks before the blood test, which I now know is a bad thing. But I have a very obvious reaction when I eat gluten and very classic symptoms...so my doctor just told me to stick with the diet. I have no idea why he didn't order an intestinal biopsy now that I know what I know. I even switched doctors for this, but I just don't trust 80% of the medical community after my lifetime experiences. Anyways, without the "official" diagnoses I am so afraid I am putting all this hope into getting better and then being crushed by barking up the wrong tree. This was like my last hope. I have a large childhood story of wasting time on doctors only to give me BS diagnoses like Chronic Fatigue Syndrome and Irritible Bowel Syndrome or depression/anxiety. I know I am not depressed (i was) and I get anxious sometimes, but I have taken numerous drug free steps to deal with it. Everything just feels so dark and unreal to me, but malabsorbtion just sees like a better fit, especially cuz I am so skinny. I am 32 with the body of a 16 year old.

If someone reads this who had felt better with the diet or knows people...let me know if 5 months and no obvious results is normal? I feel a little better, but maybe its just cuz i am eating way healthier and cooking for myself.

Also at the start of my post I say "attempt" the diet because you mess up alot in the beginning and learn where gluten is hidden on labels like "malt flavoring" has barley, and cross contamination on cooking surfaces. I have been trying so hard to avoid gluten, but then I get sick and research like crazy what it could be and find out something else I have to avoid. So its 5 months with a few occassional poisonings. But I assume that is normal...there is no way people can start this diet without messing up. Thats why I get so jealous of people that say they feel better in 3 months. Anyways, please let me know if this is normal. I am really upset right now. I feel like I have put so much effort ino this and I am going nowhere. Thanks.
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#2 speedy2056

 
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Posted 02 July 2011 - 12:01 PM

Perhaps you did a lot of damage to your intestines that you are not feeling any positive effects just yet? Different websites have given different time spans, but the average time of healing is between 2 and 4 years if you have done lots of damage. Stick with it! You know that if you eat wheat/gluten again that you will just get all sick and then you'll damage yourself some more, slowing down the healing process. It's not worth it!
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#3 yolo

 
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Posted 02 July 2011 - 12:35 PM

Hi, I just want to encourage you to stick with your diet. You are doing the right things, sometimes it just takes longer. It may also be that you have some other food sensitivities too. It might be wise to eliminate milk products and sugar right now. You could do a trial diet with none of the other common allergens too and see how you feel.

However its also very likely you are getting some cross contamination from your family if they aren't gluten free too and are having a hard time believing you. This is a tough nut to crack. It can be done, but you will need their co-operation, especially if you have a significant other. You might need to set up your fridge, cooking and dining area in a separate location. If they cook things from scratch (read "flour") it may be dangerous to walk near or through the kitchen.

It is also very likely you did get CC from the eggs cooked on someone else's cooking surfaces. Its likely they were not gluten-free.

Supplements are also a big help; just make sure they too are gluten-free! L-glutamine can go a long ways towards helping heal your gut and give you an energy boost. Best taken on an empty stomach. Ditto with co-enzyme B vitamins. Pro biotics are also a big help towards establishing good flora in your gut. I find nattokinase a big help since it reduces inflammation plus counteracts scar tissue (read scarred or flattened intestinal villi). It great for improving circulation too since it cleans out the arteries and blood vessels. Not good however if you are a bleeder! Since it does thin the blood.

Also at work, be certain to wash your hands esp after you shake someone else's hands, before putting anything to your mouth (think water bottle, your lunch, poking or rubbing your mouth thoughtfully etc.).

Bea
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#4 Skylark

 
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Posted 02 July 2011 - 12:49 PM

Sorry you're still feeling crummy. I have two suggestions. First, get your thyroid tested. Gluten intolerance goes hand in hand with hypothyroidism, which will make you tired, anxious, and depressed. Dr. David Derry says almost all cases of "chronic fatigue" are simply hypothyroidism. The so-called "normal" TSH ranges are off, and if you are over 2.5 and symptomatic you should ask your doctor to look seriously at the possibility of thyroid disease.

Second, try removing casein (milk protein) from your diet. Many people who are gluten-sensitive cross-react with casein and continue to have celiac symptoms until they stop eating both.

Best of luck!
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#5 Twizzel

 
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Posted 02 July 2011 - 12:54 PM

Thanks for responses.

I do think cross contamination plays a role. I am moving about 3000 miles away soon and selling all my stuff, so I can't buy new cook-ware. But I just realized the other day that I use my mother's wooden cutton board and cast iron grill. I was trying to cook eggs yesterday with alumuminum foil on the skillet, that was hard haha.
My mother also cooks me stuff sometimes and gets so mad when I ask her whats in it and to give me an ingredient break down. Even if it is Gluten free, she uses all her pots and pans that cook other gluten meals.
The cross-contamination via pots and cutting boards idea hit me about 3 days ago. So I'm still trying to figure a solution for that until I move.

I also stopped eating casein about 4-5 days ago because I feel so desperate, I just wanted to try something new. I didn't really have any withdrawal from casein. I read so many horror stories about withdrawal. Its hard to find nourishment without milk, cottage cheese and yogurt. It can be done, but its rough for me. I think I'm probably going to go back on dairy in about 6 days if I don't notice any change because I don't want to get skinnier than I am.

For now my focus is eliminating cross contamination from surfaces and sticking with it. I can't wait to not be tired all the time :)
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#6 Twizzel

 
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Posted 02 July 2011 - 01:00 PM

I have had my thyroid tested. They've checked blood sugar and deficiencies as well. That was probably the first thing they tested me for about 20 years ago. I've had it tested recently as well.

I have low vit D...or I did a few months ago. I have been in the sun so much now that it is summer...I doubt I do. But that is also a symptom of celiac i've been hearing.

I am so sick of doctors testing me. Thats why I said this is my last hope. I feel like if I don't have celiac disease, I am just done with trying to figure this out for awhile. I'll just deal with the cards I've been given. I can't stand medical doctors.
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#7 Skylark

 
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Posted 02 July 2011 - 01:35 PM

I have had my thyroid tested. They've checked blood sugar and deficiencies as well. That was probably the first thing they tested me for about 20 years ago. I've had it tested recently as well.

I have low vit D...or I did a few months ago. I have been in the sun so much now that it is summer...I doubt I do. But that is also a symptom of celiac i've been hearing.

I am so sick of doctors testing me. Thats why I said this is my last hope. I feel like if I don't have celiac disease, I am just done with trying to figure this out for awhile. I'll just deal with the cards I've been given. I can't stand medical doctors.

I have to take rather a lot of vitamin D to get into "normal" levels - 4,000 IU most days. (I forget sometimes.) Sun may not do it because as we age we get worse at producing vitamin D from sun.

Also, do you have the actual thyroid numbers? As I mentioned, there are a lot of issues with TSH and what gets labeled as hypothyroidism.
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#8 yolo

 
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Posted 02 July 2011 - 04:57 PM

Well its no wonder you don't feel very good. I tried living at my mother's house again recently and my health and energy went down to ground zero. I was trying to help her, but no matter, I ended up having to leave since how could I help anyone if my health is rotten?? Unfortunately some families just are not supportive. I personally would not touch anything your mother cooked. Not only talking about old gluten surfaces, but also her hands, gluteny sponges, spices, condiments and the rest...

Its very possible to de-gluten the iron pots by putting them through a self cleaning oven cycle--which also decontaminates the oven too. The problem unfortunately from the sound of it however is that while living with your family whatever you "decontaminated" from gluten would get contaminated again right away.

Can you set up a little electric or propane portable stove top with one or two burners for your bedroom, or otherwise away from the rest of the family's gluten activities? You could probably use this in a pinch in a variety of locations, like even on your drive across country, so it might be worth getting. They also sell those little mini fridges for dorms. I have used them on occasion, and whereas you can't put in much quantity of items, it still helps and is doable. You just go shopping more frequently for groceries. You could even put a lock on the fridge door if it seems they won't respect your needs. This may seem a little extreme, but this is your health we are talking about. If your family is not going to cooperate, you need to start doing things like cooking for yourself. Its also possible these items could be useful for wherever it is you move.

You can also usually find old stainless steel pots and pans at Goodwill or whatever. They are cleanable and safe to use despite old gluten uses as long as there isn't a food build up on them. Ditto with utensils. Stainless steel is the way to go.

As far as the thyroid issues go, I would get completely free of gluten first for a while before checking it out. First things first, eh? I agree with you, doctors are often a difficult bunch for some of us to deal with. Many are still uneducated about celiac and severe gluten intolerance. Sometimes, however, they come in handy despite all, so its good to have an open mind when you really need help. It seems like it was good nevertheless that your first doc. recommended you go off gluten anyway despite a negative on your test. One would think that if its good enough for him, it would b e good enough for your family; however I too know what its like not to get respect for this condition from family.

Its good to hear that you are planning to leave, since it seems like the logical thing to do in your circumstances. In the meantime try to shore up your health as much as possible by avoiding CC if that is at all doable--and somehow try to maintain a sense of humor.

Its more than likely your family's denial is just that--a stage they have to go through since they don't want to suffer the inconvenience of having to actually change some of their basic habits, and to top that they are likely afraid they too might have your condition. When you live elsewhere it won't be such a big deal. For now though it is; all I can say is to try and stay out of their way for the meantime so you can develop some kind of boundaries and mutual respect despite all.

I doubt you want to end up being at war with them, like unfortunately happened with me since I was being very pushy with my newfound realizations. The repercussions were quite unpleasant and I don't recommend creating this kind of antagonistic situation for anyone.
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#9 Kim69

 
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Posted 02 July 2011 - 08:21 PM

Hey twizzel. Am sorry you r feeling bad. Am afraid that I have a similar tale to tell. I am 14 months gluten-free and now have negative blood work so I am not getting ill from cc.

I am in bed now mid afternoon sunday because I can't last a whole day without needing a rest. At work I am exhausted by mid afternoon and am having every test imaginable to try to work out the cause.

In the meantime I will eat as good a gluten-free diet as possible. I
will stick to my low FODMAP diet and low lactose diet. Am trying to cope with stress better by learning yoga and meditation techniques. And am trying to reintroduce exercise back into my routine.

Good luck!
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May 2010 Diagnosed coeliac via biopsy - on gluten-free diet, now not anaemic
March 2010 Still Anaemic and very fatigued, abdominal pain still (Drs had thought it was related to abdom operation)
May 2009 Anaemic - had abdominal surgery; hysterectomy to remove large fibroid
March 2009 Vestibular neuritus (not sure if related but who knows!)
November 2008 Depression (still on meds - working well)

#10 Twizzel

 
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Posted 04 July 2011 - 06:10 PM

Thank you for your reponses.

I am going to try to deal with cross contamination. It seems to me thats probably the primary cause of still being so tired. I had no idea it would affect me that much. But for instance I made fried potatoes today on a cast iron grill and got so so sick afterwords and horrible brainfog for hours. Now that I am aware of what the cause is. I am starting to realize what (i think) is happening. I started using aluminum foil when cooking on the gas grill now because I got sick off that once not too long ago.

And I actually don't live with my parents right now. I live with my wife. The reason I eat so much with my family is: I work at a family business and have just become used to going to my mothers for lunch and dinner. I don't really make enough money to buy groceries all the time. Breakfast is hard too...I always wake up like 5 minutes before work cause I am so tired, so I don't eat breakfast at my house. I end up eating it on my break at my mom's. Tomorrow, I am just going to try to devote all my free energy to buying and making my own food. I guess.

I think despite me moving, I am going to get a few of my separate cooking items. I am going to bite-the-bullet and shell out a good deal of money on groceries and just become self-dependant for food at work for these last few weeks I have before moving.

Its just so hard to do because I am so tired. Getting the energy to go to the store after work, when I barely make it through the work day... then making the food for dinner and the next day's lunch... and I am not the best cook yet. I've been realizing that simple cooking isn't too hard, but I am limited in what I can make.


This is totally a topic for another post. But read this judgement free please. I quit smoking for a year, but started again not too long ago. I tried quitting again, but the stress from it actually popped something in my neck and it was really painful. Anyways I decided not to quit for the time being. I was reading that most cigarettes have gluten in papers and the glue even if they are additive free. So I was going to buy American Spirit tobacco (which I know is additive free) and a pipe...so I wouldn't have to smoke the paper. I do plan on quitting again, but I feel like right now isn't the time. I have way too much going on in my life.

So the last thing I could eliminate would be stuff like toilet papers, floss, tooth paste, soaps. But that is just way too much for me right now. I read the labels, but its just usually a bunch of chemicals and I get overwhelmed. This post is way too long, so I am going to stop writing, haha.
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#11 Twizzel

 
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Posted 04 July 2011 - 06:23 PM

Oh and about the thyroid issues. If it means putting me on medication or getting parts of me removed...I would rather be the way I am. I am done with taking a medication that I "have" to take all the time. I think I will stay this way now until I am forced to change.

But maybe I am jumping the gun. I might not even have any thyroid issues. I could get tests done, like I said...I think they tested me for thyroid stuff but I dont' really know. I am going to make a doctor appointment sometime soon before I don't have insurance when I move. I'll mention it to him. I just really am skeptical about treatments if they are for the rest of your life.

I was on many, many prescribed pschocactive medications that I feel really messed me up for a long time between ages 13 and 29 or so (im 31 now). For instance...My opinion on SSRI's, the most common treatment for depression...is that they dont' work. All they do is change your brain in "some" way...but not really to make you happy. The few people that this "change" helps, feel a bit better and thats the 33% effectiveness in a trial vs. the 24% on the placebo. And they are SO PHYSICALLY ADDICTIVE! Doctors don't tell you that. I had to try for 1.5 years to get off SSRIs. Anyways...long story and many more opinions later...I have much up experience up my sleeve to not trust anything a doctor gives me. I trust most of their intentions...but I trust nature and hardwork much more than the modern school of medicine.

side tracked. haha. anyways. I will get my thyroid checked. Thanks for the input.
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#12 Twizzel

 
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Posted 04 July 2011 - 06:25 PM

Hey twizzel. Am sorry you r feeling bad. Am afraid that I have a similar tale to tell. I am 14 months gluten-free and now have negative blood work so I am not getting ill from cc.

I am in bed now mid afternoon sunday because I can't last a whole day without needing a rest. At work I am exhausted by mid afternoon and am having every test imaginable to try to work out the cause.

In the meantime I will eat as good a gluten-free diet as possible. I
will stick to my low FODMAP diet and low lactose diet. Am trying to cope with stress better by learning yoga and meditation techniques. And am trying to reintroduce exercise back into my routine.

Good luck!



Kim69, did you get an intestinal biopsy to confirm you were celiac? Or maybe a gene test to see if it was/wasn't possible?
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#13 yolo

 
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Posted 04 July 2011 - 07:22 PM

Thank you for your reponses.

I am going to try to deal with cross contamination. It seems to me thats probably the primary cause of still being so tired. I had no idea it would affect me that much. But for instance I made fried potatoes today on a cast iron grill and got so so sick afterwords and horrible brainfog for hours. Now that I am aware of what the cause is. I am starting to realize what (i think) is happening. I started using aluminum foil when cooking on the gas grill now because I got sick off that once not too long ago.

And I actually don't live with my parents right now. I live with my wife. The reason I eat so much with my family is: I work at a family business and have just become used to going to my mothers for lunch and dinner. I don't really make enough money to buy groceries all the time. Breakfast is hard too...I always wake up like 5 minutes before work cause I am so tired, so I don't eat breakfast at my house. I end up eating it on my break at my mom's. Tomorrow, I am just going to try to devote all my free energy to buying and making my own food. I guess.

I think despite me moving, I am going to get a few of my separate cooking items. I am going to bite-the-bullet and shell out a good deal of money on groceries and just become self-dependant for food at work for these last few weeks I have before moving.

Its just so hard to do because I am so tired. Getting the energy to go to the store after work, when I barely make it through the work day... then making the food for dinner and the next day's lunch... and I am not the best cook yet. I've been realizing that simple cooking isn't too hard, but I am limited in what I can make.


This is totally a topic for another post. But read this judgement free please. I quit smoking for a year, but started again not too long ago. I tried quitting again, but the stress from it actually popped something in my neck and it was really painful. Anyways I decided not to quit for the time being. I was reading that most cigarettes have gluten in papers and the glue even if they are additive free. So I was going to buy American Spirit tobacco (which I know is additive free) and a pipe...so I wouldn't have to smoke the paper. I do plan on quitting again, but I feel like right now isn't the time. I have way too much going on in my life.

So the last thing I could eliminate would be stuff like toilet papers, floss, tooth paste, soaps. But that is just way too much for me right now. I read the labels, but its just usually a bunch of chemicals and I get overwhelmed. This post is way too long, so I am going to stop writing, haha.



I am betting you will feel better soon. By going the extra mile now, you will soon have more energy more than likely. I don't know of any plain white toilet paper you have to worry about. Desert Essence organics gluten free shampoo is a good choice. You can get it at Whole Foods or some such place. Plain unscented hypoallergenic Dove soap is also a good choice. Brush your teeth with plain baking soda, or Trader Joe's or Tom's of Maine toothpaste. Plain unwaxed dental floss with no flavors is the best choice. Trader Joe's dish soap is safe, as is the plain green Palmolive dish detergent.

If you buy plain raw vegetables, plain uncooked brown rice (not in a bin since bins are subject to cross contamination from gluten), and plain meat like chicken or pork or beef or packaged uncooked lentils (these need washing first) you should do just fine.

Don't mess with pre-packaged food since a lot of it does have weird chemicals and additives that do have gluten in them. You might want to invest in a slow cooker so you can just throw in the meat or lentils at night and put in the rice and veggies (already chopped up) the next morning so when you come home it will be done for that night and the next day. For now avoid spices unless they are raw until you get a gluten free source. Onions, garlic, leeks, fresh parsley or cilantro, maybe some fresh hot peppers or a few raw mushrooms go a long way towards spicing up your food anyway.

Gluten free rice (or corn) chex are safe and available now most everywhere. If you can tolerate it, use lactaid milk. Gluten free bread is sold at Trader Joe's and at Whole Foods etc. Plain Cheddar cheese is good for a lot of folks here. Plain yogurt with no additives is also safe. A bottle of honey makes a good sweetener, or some plain stevia without the lactose added--available at Trader Joe's.

Plain uncooked fruit is really safe for most people here. Certainly its gluten free. Just wash it first.

And be sure to always wash your hands before eating or putting them to your face or mouth. I don't know how many times I have gotten glutened that way, in a moment of not thinking. Its a hassle at first, but then it becomes second nature.

I am hoping too your wife only uses gluten free lipstick and lip balm and other make up, as well as toothpaste and always cleans her face and hands and mouth before kissing you in case she eats gluten. Hopefully at some point she will decide to go gluten free too at least at home to take the burden off your relationship and maybe even help you a bit with your meal preparation and purchasing of foods. I am betting she wants to see a happier, healthier you after all.

Avoid any supplements or packaged foods unless you know they are completely gluten free. If they are made on the same equipment as wheat etc. forget it. Even if made in the same building as wheat etc. can be dicey for some of us. So yes you do have to read the labels. If it says gluten free, its a good sign, but you still need to read the fine print because some of these manufacturers still don't get it.

Good luck. Doesn't sound easy, but then you will find its worth it and, hey eventually, it does get easier. You are still at the learning stage now.
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#14 unsinkable777

 
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Posted 04 July 2011 - 09:36 PM

Thanks for responses.

I do think cross contamination plays a role. I am moving about 3000 miles away soon and selling all my stuff, so I can't buy new cook-ware. But I just realized the other day that I use my mother's wooden cutton board and cast iron grill. I was trying to cook eggs yesterday with alumuminum foil on the skillet, that was hard haha.
My mother also cooks me stuff sometimes and gets so mad when I ask her whats in it and to give me an ingredient break down. Even if it is Gluten free, she uses all her pots and pans that cook other gluten meals.
The cross-contamination via pots and cutting boards idea hit me about 3 days ago. So I'm still trying to figure a solution for that until I move.

I also stopped eating casein about 4-5 days ago because I feel so desperate, I just wanted to try something new. I didn't really have any withdrawal from casein. I read so many horror stories about withdrawal. Its hard to find nourishment without milk, cottage cheese and yogurt. It can be done, but its rough for me. I think I'm probably going to go back on dairy in about 6 days if I don't notice any change because I don't want to get skinnier than I am.

For now my focus is eliminating cross contamination from surfaces and sticking with it. I can't wait to not be tired all the time :)


I have been diagnosed Celiac (through being scoped), and have been trying to stick to a Gluten-Free diet for years now, but there are soooo many little ways you can get some gluten accidentally. It's just terrible.
I started seeing a Naturopath, who helped me understand that because the villi in my small intestine have been so damaged by the Celiac, I haven't been absorbing any nutrients from my food. The villi are little hair-like filters in your gut. They absorb the nutrients from your food, IF they are healthy. Sometimes they have even sloughed off completely! I now get an IV bag full of vitamins once a month, and an intramuscular Vitamin B12 shot. Without them, I feel like I'm "running on empty" - just exhausted and depressed all the time.
You might want to check that out. All the best to you :)
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#15 Twizzel

 
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Posted 05 July 2011 - 07:22 PM

I have been diagnosed Celiac (through being scoped), and have been trying to stick to a Gluten-Free diet for years now, but there are soooo many little ways you can get some gluten accidentally. It's just terrible.
I started seeing a Naturopath, who helped me understand that because the villi in my small intestine have been so damaged by the Celiac, I haven't been absorbing any nutrients from my food. The villi are little hair-like filters in your gut. They absorb the nutrients from your food, IF they are healthy. Sometimes they have even sloughed off completely! I now get an IV bag full of vitamins once a month, and an intramuscular Vitamin B12 shot. Without them, I feel like I'm "running on empty" - just exhausted and depressed all the time.
You might want to check that out. All the best to you :)


thanks guys. I'll post hopefully with good news in the coming months.
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