chatycady

I was diagnosed with pernicious anemia some years ago. I am now pretty well all better, but I still take the B-12 shots. Do I really have pernicious anemia? Or was I anemic because of gluten? Anyone have any ideas on this? I don't wnat to get sick again, so I keep taking the shots.

My Dr. said I should quit the shots and see what happens. Is there a test I could take?

Could you have developed hypoglycemia? Dizziness and fatigue are a big part of it. Also quite common with celiacs. Dizzie? Black outs? Ataxia? Dark circles under your eyes?

Just a thought.

Some of us celiacs don't get better on only a gluten free diet. You may want to check out the Specific Carb Diet under Leaky Gut and other Food intolerances. Many of us have gotten better on it. It is a different version of gluten free.

Take care. You can get better!

Good evening all;

I joined our local celiac group tonight. An endocronologist spoke about autoimmune diesases and celiac. It was excellent. There were a number of celiacs there who are still sick, so I think I found my calling! Maybe in a month or two I'll have a chance to get the word out to them about SCD.

As I looked around the room about 50% of the people looked healthy. The rest were very pale and sickly looking. About 1/2 said they felt great after going gluten free the other half asked how long it will take to feel better on a gluten free diet. Some are really suffering. That could still be me if I hadn't found this thread!

Maybe I'll demonstrate how to make yogurt!

I can relate. For years I didn't want to go anywhere as I just felt bad. If I went to family event and after eating a meal I would be exhausted and unsocial and would leave early. We started taking separate vehicles to theses events. My marriage has suffered.

But life goes on...........

I used to have a horrible time falling to sleep and staying asleep. Also, leg twitches and at time horrible leg cramps that had me jumping out of bed to walk them off. NO MORE!

It takes time. I was very low (almost none) on vitamin D, plus all the other vitamins and minerals celiacs are deficient of. I also found the scdiet which finally solved the problem. Now I sleep like a baby. All night long. What a blessing! There is hope. You will get better.

Many of us with celiac or gluten intolerance have trouble digesting carbs. Nuts can be tricky as many nuts are coated with starch. Which a damaged intestine can't digest. You indicated that you are lactose intolerant that is a sign things are not working well.

If you're not getting better you may want to check out the Specific Carbohydrate Diet under the leaky gut forum. It's helped many of us celiacs and gluten intolerant folks.

Have you asked your Dr. for B-12 shots? I give my self a shot once a month now. It's not too hard to do. Also, I love coffee too. I drink Starbucks decaf. And I drink it pretty strong. I don't have any reactions to it, but maybe I"m healing slower because of it. I only drink two mugs of it each day. Plus I make the 24 hour yogurt and eat lots of it for the good bacteria. Also I eat the Dry Curd Cottage cheese with the good enzymes in it.

Don't beat yourself up. You stated earlier that you never felt better. Me too. The SCDiet was sent directly from heaven above! Enjoy life and try not to focus too much on this disease.

I can relate to the voice issue. I no longer have the problem, but I used to have days where my voice was very weak and people would tell me I sounded weak and sickly. I don't have that problem anymore. It went away as I got better.

Many celiacs have thyroid issues and other autoimmune diseases. There is a connection.

I too had trouble with the gluten-free diet (1.5 years) and was not feeling better. I found the Specific Carbohydrate Diet which was the original gluten free diet for celiacs created by Dr. Sydney Haas. If you are interested it's under the "leaky gut and other food intolerances" board. Check it out. It has been a blessing for me! I've been on it for 4 months and finally can say I have no more symptoms. NONE as long as I follow the diet.

Or you can do a web search of SCDiet. I hope you get feeling better soon.

I take Niacinimide. B-3 vitamin I believe. 3 to 5 capsules (500mcg each) It acts like a valium - relaxes me. I read about it somewhere on the internet.

Start with just 2 or 3 capsules first. GNC sells it.

With my whole heart! Yes! He's my Savior!

You might want to try to eat "simple" foods at first. Starches, sugars, grains, etc. are pretty hard to digest for a sick digestion system.

BTW I get very sick from corn starch too. I don't do any grains right now. I hope in a while to introduce them very very slowly.

Hello all;

I want to thank you for all the advice for my sister and her thyroid problems. She is going to a compounding pharmacist and they are working with her to find medication that will work. She tried armour but it has dextrose in it, which she reacts to. - Hypoglycemia real bad. Each day gets worse for her. So then she had the pharmacist make one, but it contained whey, which caused worse symptoms than the dextrose.

She is going to work on this for one month and then if things don't improve she is going to MAYO to figure this out. It's been years and she's not getting any better. Although she is fairly new to the SCDiet she has been gluten free for about 2 years. I will pass on any suggestions you may have for her.

She also has adrenal problems and therefore doesn't digest protein very well. She can eat chicken and fish, but pork, eggs, and beef are out for now. And no she can't eat the yogurt yet.

Thanks so much

Chaty

I can't eat ANY grains. Corn, amarath, soybeans, queno, gluten free oats, tapioca, etc. etc. There must be some connection as there are so many celiacs with corn protein problems.

Any ideas?

Go see the Dr. My heart raced and raced all the time for years. Sometimes not too bad, other times I swear everyone around me could here it! (they couldn't of course) My heart became enlarged. I went gluten free and did a major overhaul of my diet. (I follow the specific carb diet) and my heart is back to normal.

Heart problems can be related to celiac. - pernicious anemia, anemia etc. Untreated it can damaged your heart.

Isn't the digestive system really a marvel when you think about it. Every organ can be effected from malabsorption!

Milk isn't a good choice for hypoglycemic's. Too much sugar. Yogurt is okay, however most commercial yogurts are full of sugar. Rice - again is high in starch which the body converts to sugar - even the brown/wild rice. Pop corn - all starch - so more sugar.

Your diet sounds like mine used to be! I miss my big bowl of popcorn at night!!!! Most grains will cause hypoglycemia as they are converted into - more sugar!

I find if I eat carbs in the morning I do better than at night. Also exercise is very important. It burns off excess carbs. All meat is good protein, eggs, beans- like navy beans, black beans - they don't have the starch in them and are low carb.

I search for products that have more protein in them than carbs. And I try to keep carbs to no more than 20 grams at a meal. Youwill need to turn the food pyramid upside down. Protein - is the biggest portion Fruits and veggies next, and grains and carbs - no larger than the size of a deck of cards!

Many celiacs have a tough time digesting carbs. I have pernicious anemia and therefore lack the enzyme needed to absorb B-12. I think I lack a lot of digestive enzymes also.

Take care. You will get better if you find the right combination. I no longer have to eat every 2 to 3 hours. And no longer have symptoms - IF I eat right.

P.S. Go to the Dr. and asked to be tested for Reactive Hypoglycemia. You really need to know what's going on. I flunked the test! I hope you pass!

I believe everyone here is correct on what causes that annoying ringing! Anemia, B-12 deficiency, magnesium deficiency are all causes.

I have the "leaky gut" problem and when I eat something that I can't properly digest the first symptom I get is the loud ringing in my ears. Then it's all down hill from there!

I think it's the start of the immune system attacking the undigested food that "leaked" into my blood stream.

Hope you figure it out. Once you fix that problem hopefully the ringing will go away!

Thanks, Ibd. If I could have one thing added back to my diet, it wouldn't even be gluten. It would be dairy. But I just can't. I seem to be solidly allergic to all aspects of dairy.

Gentle heart have your tried the 24 hour yogurt? Or Dry Curd Cottage Cheese. I loved dairy and that was harder to give up than the gluten, but I am able to tolerate the yogurt. It is so very good. I think I read in BTVC that you can try the yogurt cheese - that it might be more tolerable.

Now for a question.

My sister is struggling to find a thyroid medication that doesn't have illegal ingredients. She found a pharmacist that makes the medication from scratch, but it didn't work. She gets hypoglycemic type reactions and is miserable. She was going to go back to the pharmacist and find out what was in the med. The pharmacists doesn't appear to understand the "food" problems she experiences. ANy help?

Thanks

chaty

Is there a legal canned tomato juice I can buy. I will can tomatos this summer, but until then, I sure could use some tomato juice.

Anyone find any?

Thanks

chaty

You might try a LARABAR! I bought a couple. I read somewhere they are SCD Compliant. The one I ate had bananas, almonds, and dates - that's it. They also make an apple pie bar. They are kinda expensive. $1.70 each but it sure was good!

I cheated and ate one corn curl (gluten free) one day. No reaction, so the next day I ate 2 corn curls. Dumb! Diahrrea. I follow the diet closely, but gave into temptation.

Sorry if I sounded abrupt. Here is what I found on choclate.

Dr. Haas advised not to use cocoa or chocolate and this still goes, it isn't just the sugar he was worried about. (from the BTVC website)

Lactose causes trouble. There is no lactose in the yogurt or dry curd cottage cheese, but there is a small amount in the other legal cheeses. I can't do the other legal cheese either. The villi don't produce enzymes that is the final step in digestion. According to what I've read when we can digest milk again we are healed. It's the last step, the last piece of the puzzle!

As for chocolate - Elaine says NO. Sugar or not. It's addictive - like a drug. Don't go there if you want to heal. It has no food value.

If you're not getting better on the gluten free diet you may want to read the following information. Please don't get hung up on the word "cure". There is no cure for celiac disease, but you can get better and live a healthy happy life.

Open Original Shared Link

Yes, I had joint pain and stiffness. I was tested for osteoporosis and failed the test miserably. So I asked for blood test and found I was vitamin D deficient. I started taking a double dose for a week or two and the joint pain and stiffness disappeared over time.

Get tested for both!

If that doesn't work, check out the "original" gluten free diet by Dr. Merrill Haas, which healed many, many celiacs. It is called the Specific Carbohydrate diet.