How Long For Recovery?

[DNickell]

I was diagnosed with Celiac about a month ago. That was after two months of enduring about every kind of invasive test the doctors could think of, and being told I most likely had a bleeding tumor hiding some place. I got down bad enough that I had to have blood transfusions and could hardly function at all. The worse I felt the more I tried to improve my diet (been vegetarian for over 30 years), which included going long on whole grains!

Now that I've eliminated gluten from my diet I am beginning to feel something like human again. I'm back at work and managing to get through it, but have nothing left over at the end of the day. I still have ringing ears, occassional balance problems and dizzyness, and tingling fingers and face. My hemoglobin level seems to have stabalized, but is still a bit low. More tests are scheduled and the doctor that diagnosed the Celiac said he didn't know enough about the condition to know if it could cause these remaining symptoms, or how long it might take to fully recover.

Any suggestions or comments? Anything direction I can give to the doctor who is trying but doesn't know what to be looking for?

[nikky]

I was diagnosed with Celiac about a month ago. That was after two months of enduring about every kind of invasive test the doctors could think of, and being told I most likely had a bleeding tumor hiding some place. I got down bad enough that I had to have blood transfusions and could hardly function at all. The worse I felt the more I tried to improve my diet (been vegetarian for over 30 years), which included going long on whole grains!

Now that I've eliminated gluten from my diet I am beginning to feel something like human again. I'm back at work and managing to get through it, but have nothing left over at the end of the day. I still have ringing ears, occassional balance problems and dizzyness, and tingling fingers and face. My hemoglobin level seems to have stabalized, but is still a bit low. More tests are scheduled and the doctor that diagnosed the Celiac said he didn't know enough about the condition to know if it could cause these remaining symptoms, or how long it might take to fully recover.

Any suggestions or comments? Anything direction I can give to the doctor who is trying but doesn't know what to be looking for?

It can take up to a year or more for the body to fully recover, so at this point in time it is likely that it is still the coeliac causing your symptoms. Make sure your not getting gluten from any hidden sources, check shampoo's toiletries and foods like sausages that could contain hidden gluten. Be aware that just because something says sutible for coeliacs you should still check the ingredients every so often, especially for barely malt extract. Also get a new bread board, knife, toaster etc and make sure that gluten free food is kept seperatly. If there are people in your house hold that eat gluten you need to have seperate butter and make sure jams/spreads arent contaminated.

it would also be advaisable to cut out lactose (a protein in milk and dairy products) for the first few months to give your intestines time to heal.

Good luck, get well.

[GFinDC]

Has your doctor checked your thyroid levels? You might have a thyroid problem causing you to feel tired. They kind of go hand in hand for a lot of people with celiac. Also take some B vitamins, and a multivitamin. Make sure to verify they are gluten-free before buying them. Liquid B-12 is available and absorbs in the mouth. Your doctor can probably test you for vitamin deficiencies. Some symptoms may never go away, but also if you stay on the diet, they shouldn't get worse. Your GI tract issues should begin to claar up, but it cuold take months to feel right in that area too. Some people heal faster than others, and I think it depends on how long you have been damaged by the gluten too. The big thing is to be absolutely sure you have eliminated all gluten in your diet.

[DNickell]

Geez, this is harder than it looks. A year to get back to normal?! I can deal with occassional balance problems and occassional tingling, but the constant ringing in my ears is driving me nuts. It keeps me awake at night, and that certainly isn't helping with the low energy or general healing.

How do I find out if vitamins, shampoo and such has gluten in it?

I'm currently taking Centrum Silver and a prescription iron supplement every day. My brother is a pharmacist and he tried to check on which vitamins might have gluten but couldn't find any solid information.

Most of the meat substitute foods I have eaten for 30+ years do have gluten. My wife ordered some that were supposed to be gluten free according to the company selling them. When they arrived the ingredients listed "wheat protein" which I assume is gluten. Is that correct?

One good thing is that I farm and teach at a college, so I've had the summer off. My teenage daughters covered the farm chores and kept up with the garden--from which I have had a steady supply of organic vegetables. But, teaching has been a challenge when everything starts spinning around!

[mftnchn]

You could check into the Specific Carbohydrate Diet. It is gluten-free but a stricter diet that doesn't allow a lot of carbohydrates. This is because the villi damage in the intestine can be so severe that you can't produce the enzymes to break down not just lactose, but other carbs as well.

It would be a stricter start for you, but you could see more quick symptom relief.

It does take 1-2 years for adults to heal from the damage, and even then it can be only partial healing (but often pretty well symptom free by then)

There are a number of other possibilities for your neurological symptoms, including things like lyme disease. However, I think at this point I'd be patient and wait to see if the symptoms will clear over a few months.

From my own experience, if I could redo things, I wish I could have started the SCD by the 3rd or 4th month of gluten-free when I didn't see clear symptom relief. I have had a quick response to SCD. I'm a double DQ2 celiac--which means more damage and slower healing--and I haven't recovered well on gluten-free. At a year out I was still malabsorbing and unable to digest carbs.

[Mike M]

I was diagnosed with Celiac about a month ago. That was after two months of enduring about every kind of invasive test the doctors could think of, and being told I most likely had a bleeding tumor hiding some place. I got down bad enough that I had to have blood transfusions and could hardly function at all. The worse I felt the more I tried to improve my diet (been vegetarian for over 30 years), which included going long on whole grains!

Now that I've eliminated gluten from my diet I am beginning to feel something like human again. I'm back at work and managing to get through it, but have nothing left over at the end of the day. I still have ringing ears, occassional balance problems and dizzyness, and tingling fingers and face. My hemoglobin level seems to have stabalized, but is still a bit low. More tests are scheduled and the doctor that diagnosed the Celiac said he didn't know enough about the condition to know if it could cause these remaining symptoms, or how long it might take to fully recover.

Any suggestions or comments? Anything direction I can give to the doctor who is trying but doesn't know what to be looking for?

[Mike M]

Hello, Elisa Technologies sells a very accurate test kit that tests down to 10 pars per million for gluten. It has been a life saver for me. Here is the phone number. Ask for Mary. All the best, Mike 1-352-337-3929

[ShayFL]

Gluten free wasnt enough to rid me of my neuro symptoms, although the migraines went away pronto. The others (vertigo/balance and neuropathy) werent budging. I finally cut out ALL grains and the lights came on.....I started healing. My vertigo is MUCH improved now and the tingling is better. Some days I barely notice it now.

It was the "starches" I believe holding me up. Beans are a problem too. So yes, SCD diet is great for healing.

I know it is difficult to give up foods you are accustomed to eating. No one wants to. Especially if you are vegetarian or vegan because this will leave you with little to eat by way of protein (without meats, dairy and eggs). But now is a good time to learn to "listen" to your body, so you can feed it what it needs not only on a moral level, but a biological one as well.

I cannot do soy, beans, grains or dairy. Although I was a vegetarian for about 7 years with a few of those vegan, I am thankful I added animal protein back in before I discovered what was really causing my ill health.

If your diet allows eggs and yogurt, then SCD would be good because it also allows nut butters and flours, so you should be able to get adequate protein along with all of the veggies and fruits allowed.

[roxana]

Gluten free wasnt enough to rid me of my neuro symptoms, although the migraines went away pronto. The others (vertigo/balance and neuropathy) werent budging. I finally cut out ALL grains and the lights came on.....I started healing. My vertigo is MUCH improved now and the tingling is better. Some days I barely notice it now.

It was the "starches" I believe holding me up. Beans are a problem too. So yes, SCD diet is great for healing.

I know it is difficult to give up foods you are accustomed to eating. No one wants to. Especially if you are vegetarian or vegan because this will leave you with little to eat by way of protein (without meats, dairy and eggs). But now is a good time to learn to "listen" to your body, so you can feed it what it needs not only on a moral level, but a biological one as well.

I cannot do soy, beans, grains or dairy. Although I was a vegetarian for about 7 years with a few of those vegan, I am thankful I added animal protein back in before I discovered what was really causing my ill health.

If your diet allows eggs and yogurt, then SCD would be good because it also allows nut butters and flours, so you should be able to get adequate protein along with all of the veggies and fruits allowed.

Hi. I'm on the gluten-free diet for almost 9 months now and keep feeling bad meaning I get bloated a lot and when that happens my stomach aches. Can you tell me more about the SCD diert? What exactly do you eat and what not? I understood you cut out all grains and beans. I know my stomach is very damaged and maybe it can't digest the grains and I should cut them out all too. The thing is when I first started the diet I felt really bad for a month then for the next 3 months I kept getting better and better while eating a lot of bread, pastas(of course gluten-free) , rice, polenta, milk and cheese. So the allowed grains actually got me to feeling better but I put on about 10 pounds since I'm gluten-free and I don't feel good ( I'm 5'1'' and about 110 pounds). I'd like to get back to my usual weight but more than anything I'd like to get rid of this bloating and stomach cramps. I tried not eating as much carbohydrates but I feel famished, with an emptyness inside my stomach and stomach aches. And if I eat raw vegetables and fruits I get bloated easily. Not all though, I can eat strawberries, bananas, pineapple, apples and melons.

I used to have irritability, fatigue, migraines, sleepyness and anxiety and stress before and at the beginning of the diet but they disappeared in time. I'm just left with the gastrointestinal problems.

I'd appreciated so much if you gave me some advice and more info on the diet you keep.

[mftnchn]

You can find information on google. The basic text is "Breaking the Vicious Cycle." My favorite website is www.pecanbread.com

www.breakingtheviciouscycle.info

www.scdiet.com

Here's some to get you started.

The diet sounds like it could be helpful to you for a period of healing. It eliminates carbohydrates that have to be broken down. So allows fruits and honey, and many vegetables. It allows dairy but only some cheeses, and yogurt you make yourself so that it is free of lactose.

The other thing is that it suggests stages for introducing foods, starting with the easiest to digest and gradually adding in as you heal. If you do this a little at a time it might do for an elimination diet as well.

It's pretty restrictive, but I find it very satisfying and could stay on it a long time I think. It does take more preparations at home, and do plan for an adjustment period.