Newbie With Lots Of Questions

[Nanjee]

Hi everyone. I am a "newbie" here - but have been lurking for awhile. I was a nurse for a lot of years - and recently have had my own needlework design and publishing company. I have had to give this up over the past 6-8 months - I don't have the stamina right now

I was diagnosed 2 months ago with severe gluten intolerance through Entero Lab.

Also have the immune reaction to gliadin which results in an autoimmune reaction to the human enzyme tissue transglutaminase, and both of my parents have the gluten sensitive gene.

My bloodwork was questionable ( I heard yes and no, yes and no) - biopsy was negative.

I really believe this all began about 6-7 years ago - but I've had IBS since my early 20's - so docs thought that was what the problem was. The last 4-1/2 years have been constant/daily diarrhea - to the point of being so weak I thought for sure I was dying. Have lost 35 pounds over this period of time, and am still not really gaining.

I continue to be exhausted much of the time - not like my "old self" at all !!!

I have had Fibromyalgia for 20 years - but lived "well" with it - it really didn't get in my way that much.

My Vit D count was only a 5 - so I am trying my darndest to take D supplements. It seems anything new I introduce - my stomach and intestines take soooo long to adapt Is this normal ??? Do others have problems with supplements as well ??? Also taking calcium, zinc, and the B's.

I am having a bone density scan done in 4 days to check for osteoporosis, and am also receiving weekly magnesium injections.

I hope it is okay for me to post here - I realize that a lot of you have true celiac. But with the severe bone & muscle pain, neuro symptoms, weight loss, and continued allergies to so many foods - this seemed like a great place to start

I have so many questions - but I will save them for another time, and will post them seperately. My back only lasts so long sitting at the computer !!!

I look forward to getting to you all better - and understanding what is going on in my body a little better too !!! Nursing school NEVER prepared me for this !!!

Thanks for reading my into ..... hugs and blessings,

Nanjee

[Carriefaith]

I hope it is okay for me to post here - I realize that a lot of you have true celiac.

Yes! We love to meet new people, you don't have to have celiac to post here!

My bloodwork was questionable ( I heard yes and no, yes and no) - biopsy was negative.

Was this bloodwork for celiac? If so can you remember which tests you had? It seems like you have trouble absorbing certain vitamins so it is possible that you may have celiac disease. I think that you definatley have gluten intolerance due to the results of enterolab.

Do others have problems with supplements as well ???

After a few months on the diet all my levels were excellent except calcium which was only "ok"

I have so many questions - but I will save them for another time, and will post them seperately.

Ask away!

Welcome!

[KaitiUSA]

Welcome to the board You are welcome to post here.

Which blood tests did you have done for celiac? The tTG and EMA tests are very specific for celiac.

Also, with Enterolab coming back the way it did I would assume you have a problem with gluten. I find that to be a very good test.

People who have had celiac go undiagnosed can have problems absorbing nutrients. The supplements you are taking may not be getting into you properly. In this case, liquid vitamins may be more sufficient because of the way your body absorbs them.

It sounds to me like you are not absorbing nutrients properly. The only way to heal this would be to go gluten free. You obviously have a problem with gluten.

I had low levels in pretty much everything except for b12 pre gluten free. My doctor said it looked like I had malnutrition. After being gluten free, all of my levels are back up and in the normal range again. My stomach was sensitive to supplements before I was gluten free.

Also, this may not work for some people but these are things that I highly recommend: probiotics, enzymes, and liquid vitamins. These things helped me tremendously during the time I was healing. Even now I take these supplements because they are really good for your body.

You can gain so much information on here about products and foods that are gluten free.

Good luck and feel better soon

[Nanjee]

Katy and Carrie .....

God Bless both of you for replying to my into

I am new, 'kinda scared, and 'kinda confused !!! I'm sure you have all been there.

My internist and rheumatologist are really trying to help me - and are both open to new ideas and info from other gluten intolerant/celiacs from this board.

My internist told me he thaught he knew a lot about celiac disease - until one of his patients was diagnosed 6 years ago - now the doctor is the one who is learning.

I will look into Liquid vitamins - can you tell me a brand that is easily tolerated, and also gluten-free, soy fre, lactose free ?

I'm still learning - and I'm sure maybe making mistakes along the way. Right now I am eating "pure" foods - lots of veggies, fruits, gluten-free pastas, chicken, and turkey. Don't seem to do real well with fats. And maing sure there is no cross contamination !!! I just fed my parrot - and read the ingredients on a package of his treats - 7 different kinds of wheat !!! Wash those hands - that is something I have to get used to.

I know that this will take time. Time to heal. My upper abdomen feels so much better - no more pain.

Hugs to you both ....... and thanks again,

Nancy

[Matilda]

..

[nicolesmom]

Hi Nanjee,

Just a word on vitamins and minerals. Most are not absorbed efficiently in people with "normal guts" so I recommend minerals in the chelated form. They are bound to amino acids and dissolve easier. Stay away from minerals linked with phosphates or oxides, ie calcium phosphate, magnesium oxide and cupric oxide. These are all very poorly absorbed.

also stay away from tablets with high amounts of magnesium stearate. Look for liquids or softgels or quick dissolving tablets. I usually buy my vitamins at the health food store, but you still need to read the labels!

"what you don't know may be killing you" by Don Colbert, MD is a great resource for living healthier. Check it out!

[gettingbetter]

Hi,

I have a few different food sensitivities and you may too. I have to make sure that there is no casein (including gelatin), lactose, nuts, and I try to stay away from soy. Some people are also sensitive to corn derivatives. It takes patience but call the company that makes the supplement and ask if it contains any of the common foods that people react to. I'm not allergic to any of the above (except tree nuts) from traditional skin prick tests, in fact, I'm not allergic to wheat. But, we know that gluten intolerance is an autoantibody reaction to food and we can have these kind of reactions to other foods as well. It may be why you still don't feel well after eating gluten-free foods or supplements. I asked a Mass General allergist and immunologist if they had tests for autoantibody reactions to foods other than gluten and he said that they really haven't developed those yet.

It might be helpful for you to review an article on line about "leaky gut syndrome" and how sometimes we may be reactive to most any protein for awhile until the gut heals. In truth, six months of not eating gluten or casein, I still have a hard time digesting a lot of food, especially protein. I take a mixed amino acid supplement (made by Alpha nutrition, but JoMar also makes one) that is easy to digest and will help when I just can't get enough food protein.

I have a couple of questions. Has anyone been helped by cellular (vs. serum/blood) analysis of minerals? How about hair analysis? I have read that blood tests are pretty accurate with vitamin levels but as for the minerals, cellular levels may be very different than serum levels. I have muscle twitches all over and chronic constipation which are both helped a lot by high doses of magnesium supplements (the doctors say as long as your kidneys are functioning well that you will get rid of any extra from the supplements that your body doesn't need). However, my blood work has all said that my magnesium levels are actually slightly above normal. I sure would like to know what minerals I might need and how much.

I had severe iron deficient anemia which took 5 months to correct, and I am developing osteoporosis. I have borderline hyperthyroidism, although I have fatigue, cold intolerance and above normal weight. Geez this is all very confusing. Good luck all.

getting better

blood work and biopsy positive

gluten-free cf nut free since January 2005

[julie5914]

Like many, I was diagnosed with IBS at first too. But what was great was when I went to see my gastro's NP Tuesday and she had the same thoughts many of us do. So many people have been thinking they have "nervous stomachs" or "IBS" or "spastic colon" for so long with no help (she listed them all with a sarcastic voice) and this disease is finally starting to get on the radar so that people realize this is something we can treat! It was great to hear something like that from someone in a doctor's office.

[flagbabyds]

First of all Welcome to this board. It is fine for you to post here even if you haven't been officially diagnosed with celiac disease.

For vitamins you might want to consider Centrum LIquid, horrible tasting but has some necessary vitamins and minerals.

For the first couple of months try eating very simple, jsut bland food that you have cooked yourself because that will help your intestines heal the fastest. Basically elimintate common allergens and then reintroduce them slowly one at a time when you are pretty sure that you can tolerate certain things and then do it very slowly.

Make sure that you are very careful about everything because when you first start the diet it can take a while to feel better and if you are getting little amounts of gluten then you can feel worse. Make sure that all your make-up is gluten-free along with shampoos and other such stuff. Everything you touch and use should be gluten-free.

You can send me an e-mail if you have any questions.

celiacmolly08@mac.com