Mari

There was a message about gluten withdrawal - some links below:

Celiac Notes: Opiate Withdrawal from Gluten and Casein ...

these symptoms should reinforce the need to exclude gluten from your diet. These are common symptoms of withdrawal of detoxification from gluten-derived opioid and brain ...

www.corepsychblog.com/2007/08/24/celiac-notes-opiate-withdrawal-from-gluten-and-casein

You've gotten some good nutritional advice and hope it helps, but you may want to be tested for Lyme Disease which is common in Celiacs. If the bloating continues there are some good medical tests and treatments which cold help, some people have either a Metametrix enteric panel or a Diagnos Tech enteric and saliva panel to find out if you have organisms which need to be treated. These panels look for indications of harmful bacteria,, yeasts, parasites and some metabolic problems. I usually use alternative methods but as Drs learn to use the newer diagnostic tests and treatments people report that they are satisfied with the results. Bloating is caused by bacteria and yeasts feasting on the food you eat.

U cook allk meats and poultry throughly - usually buy roasts, cornish game hens, ground turkey and cut up then frozen. I add as much of that as I want to mixed vegetables, instead of grains I use winter squash. Dry beans can be cooked and frozen. Have you tried goat's milk kefir and cheeses?

When I am glutened the reaction occurs about 6 hrs later. If I get stomach irritation soon after eating it is a food sensitivity I tested neg, for a wheat allergy which seems to give some people more immediate problems than the autoimmune response. I became allergic to hot peppers rather suddenly - I had been picking up take-out Mexican after Farmers Markets -then burning/swelling around my lips and stomach irritation. At first I thuoght I had eaten too much of the salsa but later found the antibody test to be positive. Other allergies can come on suddenly too.

Some food poisioning can produce a rapid onset of D Staphlococcus and Bacillus toxins come to mind. Even if another person had the same dish and didn't react, your portion may have had more of the toxin in it. Usually this type of food poisoning clears up rapidly with no lingering after effects.

These food restrictions are so difficult to deal with. For the past 30 years I've been meeting an old friend for a joint Birthday dinner , she lives 150 miles south and we usually meet somewhere inbetween. A few years ago there was one restaurant which served gluten free meals but they went out of business. I always have anxiety as the date approaches but went anyway and made do with what was available. One time I drove 2 hours back itching with hives. This year I was having some problems and just could not go and she was very disappointed.

I think that the people who take their own food, dishes and such have the right idea. When I do that at community dinners I admire the food and tell the cooks how wonderful it looks and confine myself to a few olives or Gene's stuffed eggs. Sometimes people bring gluten-free/df dishes and I may eat some of them on a paper plate. I can eat raw vegetable and don't eat the dip, plain ham, turkey slices, baked yams or potatoes although I don't usually eat them at home. I make comments like 'I'm glad you made this, thank you.'

Thanks to you all - I'll go check them out. Rosetapper - the Cal-Mag liquid may work for me, too, good suggestion. KatieB, Hope that I'm not next in line for B12 injections - hoping the increased stomach acids will help me enough to get the B12 from my foods. Twenty4 - I have seen that other Celiacs take TwinLab supplements.

Has the Dr tested you for Lyme Disease?

Your Dr is right on to test for parasites. The US Center for Disease Control has been telling Drs for more than 5 years that parasites are more common than they had thought and this has spurred more research into parasite problems and diagnosis. However the usuall stool tests are very poor at finding them. New molecular DNA enteric panels from Metametrix or Diagnos Tech Labs are very much better and they also id many other organisms which cause enteric and other problems, test for Celiac antibodies which is more likely to find them than the blood tests and also do some tests for other intestinal imbalances.

This website has some information about molds and yeasts altho it is commercial.

Fungus Mold Yeast Infection

Yeast infection symptoms include depression, fatigue, headaches, irritability, muscle pain, skin rash, respiratory, urinary problems, vaginitis.

www.oxymega.com/yeast_infection.html

I often say "I can't eat gluten". Sometimes I add "it can make me very sick"

I think that 'Celiacs' is rather cute - younger people using their own terms to both convey that this is a limiting problem and that their generation is dealing with it in their own way.

I would think that if you just contact your b.mom telling her she may have given you a "disease' that would be like any mon's worst fear coming true. Truely upsetting and shocking. And even worse because she gave you up and couldn't care for you. Since you have not had the genetic analysis of the HLA DQ gene you don't know if you inherited this intolerance from one or both parents. There is no way to tell which parent contributed to your intolerance to gluten and if you only inherited one celiac gene then only one of your parents gave it to you.

Maybe you could write her and tell her that you have wonderful parents and are living a happy and satisfying life but have no desire at this time to meet her and your half-sibs. This will not rule out being able to meet them in the future if you change your mind later on in life. Then you could feel free to tell her about your inherited problem and explain about the tests she would need to have to know if she, her other children and close relatives are at risk. There are both public and private mailboxes to protect you from being contacted as one of the others suggested.

Since she has indicated an interest in you she may have been worrying about your life since she let you be adopted.

One of my friends was adopted as a baby, After her adoptive parents died she began to look for her birth mother. Eventually she contacted her and found a whole new family of relatives. Her mother had worried about her all those years.

There are lawyers who specialize in unemployment and disability so that might be a good place to start. A Legal Aid worker might also help.

I got unemployment ins. after I worked on the Census but that was a special case, congress passed a bill which funded it because they paid so little in wages. Another time I was refused unimployment because I had been working part-time for a few months after years of full-time jobs. I was undiagnosed celiac and was developing more and more disabling problems. I put in an application for disability, thinking I would use the money for support while I re-trained for a job I could do but the Supervisor sent me a scathing letter about people who tried to cheat the government and would not file the application. That's why I suggest a lawyer or expert.

So I became self employed - did computer work and typing, was able to sell sculptures for a while and eventually borrowed from a relative to open a small nursery and mini-farm and started selling at Farmers Markets. There were 2 other women with gluten sensitivity at one of the markets I went to. One woman raised produce and sold sheep wool and knitted products from her sheep. The other was a rancher who sold beef. Another woman in this rural area was able to keep working as a teacher - maybe part-time - and opened a profitable gluten free food busines when she retired.

Lab tests showed that my Vit D and B12 livels are very low. I have been trying to find a Vit D which I can tolerate but so far no luck. It may be that they have some fish oil and I can't eat fish. Having the same problem finding an OK Vit E.

Anybody else have this problem? What do you take?

The Dr also advised sub-lingual B12. I have started increasing stomach acids (Betaine-HCl) but want to do the supplement for a while. Any advice?

I had this problem from my mid 20's to 50's. When I was Diagnosed with celiac disease later on the genetic DQ test showed I was a DQ8/ DQ6 with DQ b alleles 302 and 602. The The 602 gave me a predisposition to develop sleep apnea. I had other breating problems and sometimes a shortness of breath. But it was interesting in that the symptoms of sleep apnea - waking up at night in a panic because I couldn't breathe - stopped after I did some cleanses, detoxification procedures and killed a variety of parasite with herbal treatments. The shortness of breath persisted but rarely happens now since I've been gluten-free/cow dairy free for 5 years.

Here's one website I found:

Kulak Burun Boğaz Dergisi - CENTRAL SLEEP APNEA AND THE OTHER ...

- Central sleep apnea syndrome, is characterized by apnea hypopnea index (AHİ) > 5 and apnea ... HLA DQ B1-602 is seen 85% and HLA DQ A-102 is seen 95%. Most of the cases are ...

cbkbb.turkiyeklinikleri.com/abstract_48196.html

I had what felt like heart palpatations for years but they were really spasms in my upper intestine. This was the first symptom to get better when I went gluten free but I still can feel milder spasms at night sometimes due to some irritation or inflamation from some other food. I have used strong peppermint tea, the spices turmeric and cinnamon, Milk of Magnesia to help this problem.

I agree with CassP and with so many relatives with gluten sensitivity it would be wise to go gluten free. The usual blood tests may not be positive so you might consider having the stool tests which are more sensitive and may show celiac related antibodies. See the Enterolab.com website. Several; other labs now offer stool testing. More information about your risk of developing gluten sensitivies could be gained by having either the DNA marker analysis or the Molecular Serology test (see Prometheus Labs).

As an example CassP was tested and found to have DQ8/DQ8. Cass was at the highest risk of developing celiac disease with 2 main Celiac genes. I am a DQ8/DQ6 amd also was at high risk for developing celiac disease from the main Celiac gene DQ8 and high risk for developing non-celiac sprue (Leaky Gut Syndrome) from the DQ6 gene. All of CassP's children will inherit one of his/hers DQ8 genes and will be at high risk for celiac disease. On the other hand all of my children would inherit either the high risk DQ8 gene or the Leaky Gut DQ6 gene. In addition the information will show predispositions to other autoimmune problems so that you and your Dr can cope with the related problems.

I'm still very sensitive to gluten after 5 years gluten-free. I don't have a wheat allergy so my symptoms start about 6 hours after eating gluten. If I inhale gluten as with a pot of boiling pasta I begin reacting almost immediately with brain fog, poor balance and decreasing energy.

1. Sex: Female

2. Age:74

3. How long ago were you diagnosed with celiac disease? 2006

4. Does anyone in your family have celiac disease? Probably but undiagnosed, brother with Tyoe 1 Diabetes.

5. How severe is your celiac disease? Refractory Celiac Sprue and non-celiac sprue

6. Is it difficult to eat out at restaurants or anywhere outside of your home? Yes!

7. Do you believe that there should be more to be done to make this disease more aware to the public? Definite YES

8. How has this disease impacted your life? In too many ways to tell.

9. What do you think would make celiac disease easier to deal with? Increased awareness, reeducating health care professionals about gluten problems, Improving the diagnostic tests and criteria. Controlling cross-contamination of foods.

Grains , nuts, coffee and many more foods are acid-forming foods and you may get considerable relief if you learn to balance your diet with alkaline forming foods. (also called acid ash and alkaline ash foods) Our bodies are normally slightly alkaline - the more acid we become the more problems are likely to develop. Rigid and cramping muscles, deposits of minerals in joints, decreasing kidney function are only a few. One test is to use a pH strip on your saliva first thing in the morning. One of my books says using 1 teaspoon baking soda in water just before going to bed will help but this is not a cure.

Be careful about using advil. My brother was taking too much and it clogged up his kidneys so he spent a month or so on dialysis to regain kidney function. I heard that other pain meds can cause this problem.

This is just a guess but you may be releasing toxins into your small intestine. Eating meats or anything with fats/oils triggers the release of bile - it is squirted from the gall bladder into the liquified food as it is released from the stomach by the pyloric valve. The liver, where bile is made, filters out toxins and pollutants in the blood and they are excreted in the bile. Also if you have toxin producing organisms growing in your bile system a high concentration of these toxins beinng released when you eat certain foods could be causing some or all of your symptoms, especially the brain fog and depression. You may also have thick sludgy bile and gall stones. Drs have some good tests to evaluate bile system function and it is best to be tested before the bile system becomes clogged. It is also possible for you to look at the various cleanses people use to to flush out the bile system. It is good to know what the problems are but the Drs may advise you to have the gallbaldder removed - but this may not be necessary if you choose to do digestive health improvement programs which include liver or gall bladder flushes. Some people do find that their gall system recovers on a gluten-free diet but if symptoms persist it's a good idea to to find out why the symptoms persist.

Urticaria - skin problems including hives are caused by allergies. Food allergies are only one of the causes, skin contact allergies are also quite common.

Lyme Disease, often found in Celiacs, causes rashes anywhere on the body. Ask your Dr to test you for this.

My test results were the same as yours, only the the alpha gliadin was elevated. Instead of letting the Dr do more tests I ordered the genetic DNA marker test. This test showed that I had inherited genes from both of them which put me at risk for gluten problems, one from autoimmune Celiac Disease and the other for non-celiac sprue (Leaky Gut Syndrome, not an autoimmune problem). Having both put me at high risk for developing gluten problems and making the problems more severe. The Molecular Serology test from Prometheus Labs gives similar information. The DNA results and my symptoms and feeling better on a gluten-free diet convinced me to adopt a gluten-free lifestyle. Even a tiny amount of gluten can set off the autoimmune reaction so if you go back to this DR you can print out some information from one of the celiac websites to correct his ideas about gluten.

This website may help you understand the various problems caused by gluten

Introduction - The Gluten Syndrome, GlutenSensitivity, Gluten ...

The Gluten Syndrome.net. top. Patient perspectives on gluten grain intolerances and sensitivities . including the celiac disease subset,

www.theglutensyndrome.net

I had the genetic test for HLA DQ done at Enterolab.com and it was very helpful in my understanding my problems with gluten. The molecular serology test (Prometheus Labs) gives similar information. Both my parents gave me a gene which predisposed me to gluten problems. One gene put me at risk for autoimmune Celiac Disease and the other for not-autoimmune non-celiac sprue (Leaky Gut Syndrome). My risk of developing these problems was quite high, about 77% and having both these genes made the conditions worse. Any children I had would have gotten one or the other of these genes. All of them might develop gluten problems - either Celiac Disease or non-Celiac sprue. There are many different DQ2 genes and many different combinations. So you can see how 2 children could have inherited different gluten problems, or if both the parents carry a DQ gene which does not put the child at risk for gluten problems, could not develop those problems.

I did a quick search for watermelon sensitivity - it shares antigens which cause allergic reactions with grasses and ragweed. Sometimes when I get muscle stiffness after eating too much watermelon it has disturbed the acid/base balance in my body. It helps to take some baking soda in water.

Honey contains mold toxins which can cause various symptoms. You can take Vit. C daily and larger doses if you have symptoms. Bringing honey to a boil destroys some of the toxin and also adding 1/4 tsp Vit. C to jar and mix well. If sensitive to molds then avoid foods such as cheese, breads unless fresh and stored in paper (can be frozen), discard any fruit with mold as the toxins diffuse through the fruit and check for any molds growing in your environment - in walls, under sinks or any damp places.

Whenever I eat honey I develop gas and bloating. The honey feeds the intestinal bacteria which produce large volumes of gas.

I found this website informative

Introduction - The Gluten Syndrome, GlutenSensitivity, Gluten ...

The Gluten Syndrome.net. top. Patient perspectives on gluten grain intolerances and sensitivities . including the celiac disease subset,

theglutensyndrome.net

It may be that you need some positive feedback to counteract the negative aspect of such a restrictive lifestyle. Ask your Dr. to set up tests to check your antibody levels at regular intervals so you can follow your success with the diet. There are several other Celiac/gluten forums with people who will support and sympathasize with you and you will find many others who hate the limitations on diet and lifestyle. You may not realise it now but your inner self really doesn't want to develop refractory sprue, osteoporosis, gluten ataxia, neurological problems.