Three Months Gf With Zero Results

[marielynor]

I haven't knowingly ingested gluten since early September (and have been excessively cautious about everything I've put in my mouth), and, after three gluten-free months, I feel no difference whatsoever. Granted, I've yet to be diagnosed with celiac, but I've had bloodwork done that suggested I might have it and I can relate to so many of the symptoms discussed on this site. Here's a short list: cramps, diarrhea, bloating, fatigue, joint pain, mouth sores, very rapid heartbeat after eating sometimes. A few I don't remember seeing mentioned on this site: raynauds phenomenon (which is where the blood vessels in your extremities constrict and stop the blood flow, so your fingers, toes, nose, ears, etc. turn white, numb, and very cold); I'm often uncomfortably, sometimes painfully cold; and I've had numerous strong positive ANA (anti-nuclear antibodies) blood tests. My dad is a doctor and my fiance is in med school and they both tell me it seems I have some sort of autoimmune or connective tissue disorder.

Does anyone know if celiac is associated with this type of disorder? Also, assuming no gluten is being unknowingly ingested, has anyone heard of it taking over three months of being gluten free to feel any kind of a difference?

For the past seven years, these stomach problems have been a constant source of stress in my life, but the past few days have been unbearable. I had a delicious gluten-free Thanksgiving dinner, but spent the entire weekend following it crying and feeling so completely frustrated and depressed because I felt so sick. It was all gluten-free. I know it was all gluten-free. I don't understand. Can anyone help? Thanks in advance.

[CindyK]

Bless your heart! I just wanted to respond and let you know someone is listening to you. I am feeling very frustrated too. I can tell you that I have read several articles from this site that indicate a relationship between autoimmune disorders and celiac. I too suffer from what I call freezing spells and unbearable coldness in my hands, feet and nose. I have hypothyroid and it is regulated. I had always assumed the cold intolerence was caused by that. Believe me I don't mean to minimize it by using the word intolerence it is more like unbearable.

Good for you for sticking to the gluten free diet. I know you must feel discouraged. I have been reading this message board for several months and have noticed that it is not uncommon for people to experience ongoing symptoms after starting the diet. It seems there are so many factors such as learning there is Gluten where you least expect it, like a favorite drink, shampoo, etc. Also I have noticed tht other food intolerences seem to go along with this. I am trying to learn more now too but I have seen several people refer to Caseian (sp) intolerence. Also I have seen something called refractory celiac memtioned. celiac3270 tends to post some very helpful information and he seems to have continued to struggle with symptoms on the gluten-free diet. (Actually, all the posts have been very helpful but I have seen celiac3270 post consistently since I started checking in here.)

Don't give up. You will find the answer and your sticking to the diet is a very significant accomplishment.

[darlindeb25]

i'm sorry you are having such a bad time---and yes--raynaud's does sometimes go hand in hand with celiacs--i have raynauds--since you have only been gluten-free since september--it may just be that you are one of us who takes longer to feel better and it is possible you are still getting gluten from something you havemissed--i still do and i have been at this for over 3 years--keep at it and i do hope you get to feeling better soon deb

[Deby]

Rynauds, I never heard of that. This could be the expanation for my constantly frozen hands, nose and feet. Is there tingling and achiness as well?

I have to say I feel for you. It can take a long time to feel better. Are you sure there has been absolutely no change at all? Another thought is that you said you had stomach problems for seven years. It could be that you have had celiac for seven years or even longer since the problems don't crop up right off all of the time. That can take a long time to heal.

The suggestion was made to get off of milk (casien) as well. That's a good idea. You may not always have an intollerance for milk products but they are harder to digest, so getting off can give your body a chance to heal. Also think about corn, another had to digest grain that can cause trouble.

An elimination diet might be a good idea for you to see where you digestive problem is. With all of the talk about wheat and gluten, that has become a first line of defense, but with digestive problems, it may well not be the whole answer.

Good luck

[marielynor]

To all who replied, thanks. I really appreciate the advice and support.

In regards to the casein issue, what's interesting is that the one time in the past seven years that I've felt normal was a couple years ago when I tried the Atkins diet. I ate almost nothing but meat and cheese for a couple weeks (I stopped because my dad convinced me of how unhealthy it was) and I felt fabulous, just like a normal human being. It almost seems I'm just allergic to carbs.

But perhaps I am unknowingly ingesting gluten. I just can't imagine where it would be coming from. I'm SO careful.

Anyway, thanks to all of you again.

[FreyaUSA]

I have Reynard's also, but I also have nerve damage to my hands and arms (but thankfully not to my feet!) I never had the pain until the nerve damage happened. As far as the cold, during the winter I take very hot showers sometimes 2-3xs a day just to warm back up. I need a hot tub!

Marielynor, with celiac disease, one of the problems with not getting it diagnosed early is that it can cause you to not be able to handle other foods as well. Lactose is often mentioned as one of the first difficulties noticed, fats can be another, other non-gluten containing grains can also become impossible to handle. The longer and more extensive the damage, the more sensitive you're likely to become.

If you're not feeling better at all, it might be worth your while to do an elimination diet for a couple weeks. I believe what you do is take your food variety down to its bare minimum, removing all the major food allergens from your diet, then, one by one, try something in it's purest form (i.e., a hardboiled egg, glass of milk, plain cooked corn, glass of soymilk or plain edamame, etc.) and see what happens.

For me, I'm mildly sensitive to most grains, corn being the least offensive to my system, so I actually eat almost no grains at all. Thank goodness for beans, since I'm also extraordinarily sensitive to red meat, this being beef, lamb and even osterich. They have me in total cramping agony for hours with the total system purge . Other meats I have to be careful with, too, and they have to be VERY lean or forget it. And lastly, I can't eat anything cooked with heavy cream or fats, same agony reaction. It took me some time to figure all these things out, but when everything is going well, I feel better than I have in over 15 years.

[Guest jhmom]

It sounds like to me what you are describing is LUPUS or as you said some sort of autoimmune connective tissue disorder.

I know for myself after being gluten-free for over a year I continue to have GI problems but I KNOW when I ingest gluten, it's more like a daily struggle for me. I too have a high positive ANA and have learned that Lupus can affect the GI tract and Celiac & Lupus can be related. I also have hypothyroid (controlled for several years now) and Raynaud's.

I do hope you find some answers soon. Have you seen a Rheumy yet? If it were me that is the next doctor I would make an appt with.

[tom]

Try totally dairy-free for a couple days.

I got a ton better w/ gluten-free, but also excluding dairy made me glad to be alive.

Open Original Shared Link

I've only heard of 2 margarines w/out whey - one is Nucoa. And sodium caseinate shows up too often in products that are lactose-free and called "non-dairy". They are NOT non-dairy.

It's worth a shot - i noticed a difference in 1 day dairy-free and felt WAY better by day 2. This was after 10 mos gluten-free.

[marielynor]

Thanks again to those who replied. I think I will try eliminating dairy, because I do have stronger reactions when I consume dairy, or at least milk and ice cream. I just can't stop wondering why I felt the best when I was practically eating ONLY cheese.

And, to answer whether or not I've seen a rheumetologist, yes, many times actually. And, after many tests, she pretty much ruled out lupus. She was the one who suggested it might be celiac.

I'm so confused. And nervous. I'm going to Germany in two weeks and more than anything, I want to feel okay while I'm there.

Anyway, thanks again.

[baldridgem]

For those of us that are not improving on the gluten-free diet I

recomend the Specific Carboydrate Diet. It excludes

starches and sugars. It is strict.It works!!MB

[tom]

Interesting that you mention cheese. I recently found that the origins of the words casein and cheese are identical in latin et al.

Maybe it's only the lactose for you. You can just take the lactase pill and not even further change your diet.

In Germany you'll want to bring something like this. Open Original Shared Link

And a couple other potentially helpful links:

Open Original Shared Link

Open Original Shared Link

Elsewhere someone wrote:

"In Germany there are healthfood stores whose signs include the word

"reformhaus." In them, gluten-free products are shelved together. Most

large cities have several (at least), as do most smaller cities and towns,

but the selection in the latter are smaller."

Wish i was going to europe . .. . .. .