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jebus

Symptoms Even When Sticking To Gluten-free Diet

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Hi all,

Forgive me if you've covered this in the past; I'm new here, having been diagnosed about two months ago. I'm a 49 year-old woman with an under-active thyroid and the Celiac's was diagnosed though bloodwork alone, after telling my endocrinologist about the stomach problems, extreme fatigue, etc. I've been absolutely gluten-free since September 1, but still will have bouts of diarrhea and cramping that last for a few days and leave me extremely weak. Is this because of the malabsorption of vitamins and minerals (also confirmed by bloodwork), or the length of time it takes for the intestinal lining to heal? Please, if anyone has gone through this at the start (please don't say it lasts forever), give me some pointers!

Thanks, Jebus

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Jebus, it is quite likely that these continuing problems are caused by other intolerances (even though it is possible that you are just slow to heal). I suggest eliminating all dairy (which, all by itself, can cause those symptoms, even if you weren't gluten-intolerant) and soy, to see if that helps. If not, you may have to try an elimination diet to find out what is causing these symptoms.

I get celiac disease symptoms from all of the lectin family, which includes all grains (not just gluten grains, for instance rice gives me terrible diarrhea, bloating, extreme fatigue and stomach cramps), all dairy, legumes (including peanuts and soy) and the nightshade family (potatoes, tomatoes, pepper, eggplant, tobacco). For more information (if you suspect those), follow my lectin link in my signature.

I hope this helps.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Welcome to the forum. I agree with Ursula that perhaps you should stop all dairy for awhile. Some say 3 to 6 months before reintroducing it. Are you sure that you are not getting some cross contamination from somewhere? did you get a new toaster, not using an old wooden spoon, new colander, checked your lipstick, etc. I hope I did not insult you with the cross contamination questions. I know that I did not realise about the lipstick for almost a year after going gluten-free. I hope you feel better soon.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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First of all, I forgot to welcome you to this board, so: Welcome!

Secondly, I forgot to mention that you need to check all your personal care items for gluten, and replace the ones that do. Look for things like wheat germ oil, barley extract, oat bran in shampoo, conditioner, lip balm, lipstick, toothpaste etc..

Nini has put together a 'newbie kit', which is quite indespensable for people new to the gluten-free diet. Here is the link: Nini's site Scroll down to the bottom to find the newbie kit to download.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Hi all,

Forgive me if you've covered this in the past; I'm new here, having been diagnosed about two months ago. I'm a 49 year-old woman with an under-active thyroid and the Celiac's was diagnosed though bloodwork alone, after telling my endocrinologist about the stomach problems, extreme fatigue, etc. I've been absolutely gluten-free since September 1, but still will have bouts of diarrhea and cramping that last for a few days and leave me extremely weak. Is this because of the malabsorption of vitamins and minerals (also confirmed by bloodwork), or the length of time it takes for the intestinal lining to heal? Please, if anyone has gone through this at the start (please don't say it lasts forever), give me some pointers!

Thanks, Jebus

First, thanks to you and Mouse who both pointed out dairy as a potential problem. I never thought about it, but it was worse after I ate yogurt, and again after I ate cheese (ironically, because it's binding). That will be my next elimination and hopefully, it will help.

Thanks again,

Jebus

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Welcome,

and yes eliminating dairy can be a huge help and that has more immediate effects than eliminating gluten.

yes it can take people a long time to heal and usually 3-6 months is a good estimate arond how long, but it could take a lot longer just to warn you.

Do make sure to check all your cosmetics becuase those can be hidden sources of gluten and your lip care products especially are the easiest ones that you can get gluten from.

welcome to the board and you will find great resources here!


Molly

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Welcome!

The responses you've gotten so far are right on the money. I'd also like to point out that the longer you go between glutenings, the better you'll start to feel in general. I felt like a different person within 2 days of stopping gluten and felt so much better over the next few months. As careful as I was, though, I was still getting glutened at least twice a month, and with symptoms that last a week after a glutening, there wasn't much time in between glutenings to feel good! Now that I've not had a glutening in a while, I am amazed that I could ever feel this good!

Hang in there!


ELIZABETH

gluten-free (04.17.2006)

corn-free (03.27.2007)

xanthan gum-free

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Hi Jebus, welcome!

Everyone here already has great advice. I went gluten free about a month before you did, and was having similar problems. I found it helped to keep food as simple as possible. Just plain meats (no marinades or pre-injected, make sure it's "natural" when you buy it), plain veggies, fruit, rice. Avoiding food that is highly processed, even if it's gluten free, seems to help me.

Also keep on the lookout for other intolerances. Like others have said, it might be common allergens, like dairy, soy or eggs, or other foods that you normally wouldn't suspect, like rice, potatoes, or chicken. Ursula suggested an elimination diet. If you haven't done one already, I highly recommend it! That was how I first discovered my gluten intolerance, and also found out that I don't tolerate chicken or broccoli, two things I used to eat a lot of.

I hope you feel better soon!


~Li

Celiac, dx Sep 2006

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to add to the dairy conversation, a couple things:

you might be what they refer to as "temporarily" lactose intolerant. Many new celiacs do not react well to lactose at first because of the damage in their intestines. The enzyme lactase (which helps digest the lactose) is found on the tips of our villi....so when our villi are damaged, the lactase is not there to help digest. So, the theory is that once you are healed, you will be able to consume lactose with no problem.

others find that they are just flat out lactose intolerant (permanent) in conjunction with celiac. they take lactaids and do fine.

OR-it could be that the problem is the casein protein, not the lactose. Many people who react to dairy think it is the lactose, but it is actually the casein (I am one of them!) So, you could actually be casein intolerant, which is all dairy products and derivatives, etc. There isn't a little pill for that one.

Also-are you eating out at all? And, have you checked for sources of cross contamination in your house (butters, mayos, things that can be "double dipped" in that touched gluten containing sources)

It can take awhile to heal....so even though you are two months in, you might not have healed completely (it takes many months for some!). So even if you are 100% gluten free, your body might not have healed, and therefore, cannot absorb/digest correctly yet.

Hope this helps some.

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I agree the dairy. I've only been gluten-free for about a month now and I've noticed some strong reactions to pure dairy and butter. The reaction is less when I use skim milk and margarine. I have heard that the older you are, the longer it takes to heal. I'm 45 and that certainly seems to be the case with me. Some symptoms went away immediately while others have hung on for weeks - but those are finally showing signs of improvement as well.

One more thing to check - do you have pets? Wheat is a primary ingredient in my dog's food and treats so I have to wash my hands after taking care of the dog's needs.


It's not about winning, it's about having fun while you play. Gamecreature

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I'm mostly just reiterating what others have said - if you've checked for hidden glutens in food (malt, soy sauce, oats, etc.), and dealt with all possible cross-contamination (toasters, wooden spoons, shared teflon or cast iron pans, etc.), minimized exposure (shared kitchen items, restaurants, processed foods, etc.), then looking at other food intolerances is the next step.

Good luck!


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Hi all,

Forgive me if you've covered this in the past; I'm new here, having been diagnosed about two months ago. I'm a 49 year-old woman with an under-active thyroid and the Celiac's was diagnosed though bloodwork alone, after telling my endocrinologist about the stomach problems, extreme fatigue, etc. I've been absolutely gluten-free since September 1, but still will have bouts of diarrhea and cramping that last for a few days and leave me extremely weak. Is this because of the malabsorption of vitamins and minerals (also confirmed by bloodwork), or the length of time it takes for the intestinal lining to heal? Please, if anyone has gone through this at the start (please don't say it lasts forever), give me some pointers!

Thanks, Jebus

It can take up to two years, especially for older adults, to heal their intestinal damage...so hang in there because your on the right path ;)


Gluten Free...negative blood results...absolutely positive diet results.

Dairy Free...absolutely positive diet results.

Egg Free...there goes another one...absolutely positive diet results.

Allergic to Codeine.

"Life is like a box of chocolates...you never know which ones may have gluten in them:)"

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Thank you all for being so helpful! I think it must be dairy, which I have begun today eliminating entirely and, no, I never eat processed foods (because of my migraines) and I very rarely eat in a restaurant. I'll stick with the simplest thing to try right now, but from the sound of it, everyone eventually winds up living on dryer lint and bottled water, right? Oh well, at least I'll save on the grocery bills (just kidding; our sons are 17 and 22 and it's like living with a plague of locusts).

Thanks again, everyone,

Jebus

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Jebus,

I have just seen your post and have not read the replies, but feel like answering with my experiences. I am loathe to advise, as I would hate to put you wrong.

you are about the same age as me, and I was diagnosed about 8 months ago. It has been hard, but I have not got the other problems you have. I had D about everyday pre diagnosis, and the crampings with D on occassions like you.

The first few weeks gluten free were like a complete reversal, but then I went back downhill. I am still not sure why, I blamed everything from gluten, to milk, to soy to peanuts. Even blamed the water at work.

So I eliminated things, and I still did not feel right until I sorted out the water at work. The zip was stewing all day everyday. That seems to have sorted out the problem, and am now nearly normal. But I can't say it was really the water, or just that I am healing after a few months being gluten free.

But in having said that, I know I am no longer the relaxed easy going person I used to be and wonder whether stress plays a part as well in our symptoms. The first twinge, and I would be like, wow, I ate something wrong and would dwell on it and yes it would get worse. Now the first twinge, I try to go and do something and forget about things. It worked on Saturday, and I was able to forget it and it went. So as hard as it is, I guess I am admitting some of my problems have been stress related.

Catherine

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