Need Your Expert Advice Again!

[Bonnie]

Hi guys, need some help please.

Next week I've been gluten-free for a year. Positive changes - not ONE incidence of cold or flu (which was a monthly thing), no more sinus, ear or throat infections, depression/anxiety gone completely.

Negative changes - intolerant to just about everything I put in my mouth still after all this time. Driving me nuts, still very bloated a lot of the time. Sore arms often - right now for instance! Still chronically constipated - major problem for me. Wake up with yellow eyes and face - told I have very elevated liver enzymes. Homeopath said its Gilbert's. Still very tired all the time.

I do not have a "proper" diagnosis. I thought I was ok with that after a year but I'm not. Saw a specialist last year who wanted to do a biopsy. I cancelled because I had just lost my little brother. I was originally diagnosed via the BEST system which is bio-energetic stress testing. I had blood tests but I had already been gluten free for 6 weeks and they came back negative.

I have made an appointment to see a different GI on Tuesday next week. Now I know I will have to do a gluten challenge for blood tests and/or biopsy - if he takes me seriously that is!

I am petrified of eating gluten again. The smallest amount affects me now. Did my own gluten challenge 6 months ago and was as sick as a dog for 10 days.

I honestly think it would be easier for me to stay off gluten forever with a proper medical diagnosis. I also need to know what is causing my other ongoing problems - whether its just leaky gut or whatever.

Do you guys think I should go ahead with the testing?

Sorry its so long!

Yvonne

[debbiewil]

Bonnie,

Why don't you try to see if the doctor will do COMPLETE nutrional vitamin/mineral tests. I had improvement in some things, but not everything after 6 months. I got my doctor to run SOME tests - (couldn't convince her to check everything, so I still think I'm missing some stuff) and found that I was still low in Iron, which I expected, but also low in folate (folic acid) which I hadn't known. Started taking that about 10 days ago and have seen some improvement in the last day or two in a couple of things. I still want to get the rest of the tests, because I'm sure the years of malabsorption left me very low on lots of things.

Re: the sensitivity to other foods - I've had problems the last several years with spinach. And also very low iron levels/anemic. One of the doctors said it made some sense, because the spinach is very high in iron. Since I couldn't absorb the iron, it simply irritated my digestive system more. I can now eat cooked spinach, but raw is still a problem (And I loved spinach salad.) Anyway, you could still be low in some things needed to digest some foods, which could be why the foods are still problems. And being low in nutrients, you wouldn't be feeling great either. Just a suggestion.

Debbie

[Bonnie]

Debbie what you say makes perfect sense. Its just so frustrating not knowing what is causing the problems. It would be wonderful if someone would say to you "stay away from gluten, dairy, nightshades etc.". Yes I know - in an ideal world - and there are so many of us in the same boat!

I'll go and see what this GI has to say and then decide whether I am willing to go back on gluten or not. But I will definitely ask for the other tests you mentioned.

Thanks

Yvonne

[Guest katzmeow21]

Hi guys, need some help please.

Next week I've been gluten-free for a year. Positive changes - not ONE incidence of cold or flu (which was a monthly thing), no more sinus, ear or throat infections, depression/anxiety gone completely.

Negative changes - intolerant to just about everything I put in my mouth still after all this time. Driving me nuts, still very bloated a lot of the time. Sore arms often - right now for instance! Still chronically constipated - major problem for me. Wake up with yellow eyes and face - told I have very elevated liver enzymes. Homeopath said its Gilbert's. Still very tired all the time.

I do not have a "proper" diagnosis. I thought I was ok with that after a year but I'm not. Saw a specialist last year who wanted to do a biopsy. I cancelled because I had just lost my little brother. I was originally diagnosed via the BEST system which is bio-energetic stress testing. I had blood tests but I had already been gluten free for 6 weeks and they came back negative.

I have made an appointment to see a different GI on Tuesday next week. Now I know I will have to do a gluten challenge for blood tests and/or biopsy - if he takes me seriously that is!

I am petrified of eating gluten again. The smallest amount affects me now. Did my own gluten challenge 6 months ago and was as sick as a dog for 10 days.

I honestly think it would be easier for me to stay off gluten forever with a proper medical diagnosis. I also need to know what is causing my other ongoing problems - whether its just leaky gut or whatever.

Do you guys think I should go ahead with the testing?

Sorry its so long!

Yvonne

Well, my opinion, which of course is just one of many is that it is obvious you are totally intolerant to gluten and do not need to gluten challenge yourself again. Too many of your symptoms say yes you probably have celiac . Maybe have the genetic testing done and ask to be biopsied without the gluten challenge. This way you will still see if you have damage or not to the villi and/or the proof may come from the genetic testing which is really non invasive

I suggest you take a good quality probiotic several times a day. Also I take 500 mg of magnesium 2x day.

This does help my constipation problem. I also take 2 tablespoons a day of cod liver oil. Take digestive enzymes with your meals along with hydrochloric acid to ensure minimized allergy/leaky gut side effects.

I do this and I notice a difference in symptoms. Also take a great quality multivitamin.

People who have liver/bile problems should also take bile salts to improve liver function. (He also says this in this book I quote from below.

The key here is replenishing good bacteria constantly into intestines that are fighting for their life and moving the bowels at least once a day to keep down toxicity. This in itself will take a load off the liver to some degree. I would definately not do any milk products period. Do you eat corn? Soy?. A lot of sugar or other carbohydrates. I especially find that if I start eating a lot of the baked goods made from celiac friendly flours I bloat terribly and it can last for several days. A lot of these celiac friendly flour carbs I believe are very difficult for celiacs to absorb because of bacterial overgrowth due to continual compromised gut integrity, leaky gut or whatever.

I have just read a book called "Celiac disease, a hidden epidemic" It is written by Peter H.R. Green M.D.

This gentlemen is the director of the celia disease center at Columbia University. I highly suggest you get this book. It answers so00.... many of the questions I see on this board. It just hit the shelves in '06 so it is brand new. It leaves no stone unturned.

Anyway, it speaks about liver disorders and celiac, that 90% of sufferers are women. I will just type it verbatum for you. You don't mention that you have any itching but... here goes

"AUTOIMMUNE LIVER DISEASE

Several autoimmune liver diseasea are associated with celiac disease. The best established relation is with primary biliary cirrhosis(PBC) This condition results from an inflammatory process in the liver affecting the bile ducts. PBC eventually leads to cirrhosis of the over. While PBC is not comon, about 90 percent of the patients are women.

Patients have difficulty excreting bilirubin(a waste product of red blood cells) and cholesterol. Bile salts accumuate in the liver that may contribute to the major complaint of patients with PBC-itching (pruritus)

Many also become jaundiced (develop yellow skin) caused by the rentention of bilirubin, which is secreted along with bile pigments that give urine its characteristic yellow color.

PBC is often suspected because of abnormal liver tests discovered when a patient is being tested for another illness. It requires a liver biopsy to be positively diagnosed as well as the presence of specific autoantibodies in the blood.

The relationship between celiac disease and PBC is so strong that patients with PBC are often screened for celiac disease with or without symptoms. " It also says that osteoporosis is common in this condition and aggravates bone loss.

Anyway I wish you the best..... and buy this book. You won't be sorry.

regards mj

[Bonnie]

Hi MJ,

Thank you so much for taking the time to write me such a long detailed post.

My gut tells me I have Coeliac (excuse the pun)! I have actually thought a lot about just having the gene testing but if it comes back negative I'm back to square one. I am convinced my mother has Coeliac. As I posted before she is 55 years old, 5 ft 4 and weighs 81 pounds, has lupus, loss of hearing, hair & eyesight, sores on her body (DH I think), chronic purple bruising all over. She was constipated till about age 37 which changed to D and has never let up.

I am going to order the book you mention right now. I did buy Dangerous Grains and it answered a lot of my questions but not all.

I just feel that I eat really healthy, don't smoke, hardly touch alcohol, have been gluten-free for a year and I really should be a lot better by now than I am. The other problem is that I LOOK healthy. Meanwhile I feel sick all the time inside, I woke up this morning feeling really nauseous, indigestion, hectic headache, achy body - actually I wake up like this most mornings.

Anyway I will take all your advice about the hydrochloric acid etc. and I will ask the GI to do the gene test.

He will probably think I'm a hypochodriac - they usually do.

Have a great day and thanks again! I will get there!!

Yvonne

[key]

Yvonne,

I have been gluten free for almost a year also in May. I too am frustrated. I know longer have chronic vaginal yeast infections, bone pain (unless gluttened), anemia gone, lowgrade underlying nausea, not losing weight, etc. When I eat gluten I get diarrhea with undigested food, stomach hurts bad, depression, bone pain, etc. I also had borderline blood tests after being gluten free for two months and my son has celiac, so I know I have celiac, but some things are just not getting better for me. Main problem is constipation. It isn't normal either. It is like having the consistency of diarhea or something and it just doesn't come out. With it, I am bloated, nauseated at times, back pain and heartburn. If I go to the bathroom everyday i feel SO much better. If I don't, I have fatigue, depression, bloating, sleep disturbances, back pain and generally wake up feeling like a truck ran over me. It is SO frustrating. I am also vegetarian and so I can't just eat meat an vege's. I can't stand it when my stomach is bloated and I feel like something is crawling in my stomach it is so rumbly.

I just had a few weeks of feeling perfect, only to come back to this. I don't think I did anything different.

I think like everyone else. Gluten obviously makes you sick. You sound like me and I have never been able to do a gluten challenge. It makes me SO sick. I tried a few months ago and I too was sick for at least 10 days!! Miserable!

Goodluck finding the answers. Sometimes I think I should just quit eating!

Monica

[loraleena]

Have you looked into candida overgrowth at all? I am pursuing this. All your symptoms can be caused by this. Check it out on the internet to learn more. This is very common in celiac patients.

[danikali]

Just an idea: try the SCDiet. I've been on it for about one month and a week now, and I no longer constipated, no longer bloated, and I'm feeling really really good. A lot of the symptoms that you said that you have now, I was still having being gluten/casein free. It's a very good diet for someone with a 'leaky gut' and a million different food intolerances. I don't know if I ever want to go off of this diet. It's no sugar, no starch, well, here are some websties for it. There are a lot of us here on it.........

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

It's a diet that just makes a lot of sense. Some people say it only works for 80% of people, I believe that it would work for everyone if they don't give up on it. It just makes too much sense.

And don't touch gluten.

[Bonnie]

I saw the GI yesterday. After telling him my history, he told me the first thing that is wrong with me is that I am depressed. I was gobsmacked - that was the absolute last thing I expected to hear.

Monica, he told me that most of my problems are from constipation. He reckons that if I can evacuate my bowel properly on a regular basis most of my symptoms including food sensitivities will clear up. He says my system is toxic from having been constipated for so many years. He doesn't think there is anything wrong with my bowel rather that it is just "lazy".

I am having a colonoscopy and a gastroscopy next Wedesday.

As far as the Coeliac goes, he says it is very unlikely they will pick anything up as I have been gluten-free for too long. He thinks it is unlikely that I have it as the only "true cases" are people from mediterean descent. Honestly!!!! However, he says I obviously am gluten sensitive and should just tell people I am wheat intolerant.

I give up and will just stay gluten free without a diagnosis.

Danikali I have briefly looked into the SCD diet and thought it too extreme but I will definitely have another look now!

Yvonne

[jenvan]

I saw the GI yesterday. After telling him my history, he told me the first thing that is wrong with me is that I am depressed. I was gobsmacked - that was the absolute last thing I expected to hear.

Monica, he told me that most of my problems are from constipation. He reckons that if I can evacuate my bowel properly on a regular basis most of my symptoms including food sensitivities will clear up. He says my system is toxic from having been constipated for so many years. He doesn't think there is anything wrong with my bowel rather that it is just "lazy".

I am having a colonoscopy and a gastroscopy next Wedesday.

As far as the Coeliac goes, he says it is very unlikely they will pick anything up as I have been gluten-free for too long. He thinks it is unlikely that I have it as the only "true cases" are people from mediterean descent. Honestly!!!! However, he says I obviously am gluten sensitive and should just tell people I am wheat intolerant.

I give up and will just stay gluten free without a diagnosis.

Yvonne, well the bit about being mediterranean is really annoying! Well, I also agree that if you are convinced gluten is harmful to you, then don't go back eating. However, I would definintely pursue a plan of action with 1. the constipation and 2. the liver/gilberts. Did you ever try going off dairy or doing a rotation diet to ck on it or soy, or the other most popular culprits? I used to be in your boat, and still had C issues after going gluten-free...I took out the dairy and am good now. I do take psyllium on occasion when needed, and that gets things back in order. Unfortunately diet isn't enough for some people...and they need a fiber supplement. I still really really recommend trying the psyllium. It not only helps you go, it cleans out stool that has been in your colon for a while too. I'm sure the chronic C can't be helping the liver any either. PS--I'm sure you may already be familiar with the information, but I thought this article on Gilbert's was helpful: Open Original Shared Link

There are no meds or real treatments for Gilberts...so if it was me, I would pursue a liver-friendly/cleansing diet. I am talking about eating foods that have natural detoxifying properties...not necessarily a liver "cleanse." Those are often too hard on the liver. Dehydration and skipped meals apparently can make things worse also.

Oh, and I also had a doc tell me depression may be the cause of my tiredness and suggested meds. I was like "no, if I am depressed its b/c I'm tired!"

I hope you feel better soon! Let me know what the tests find, if anything... I have put some detoxifying tips below. Some things have not necessarily been "proven" scientifically, but they certainly can't hurt to try:

10 Ways to Help Your Body Detoxify

After a detoxification program, you can cleanse your body daily through diet, supplements and lifestyle practices.

1. Eat plenty of fiber, including brown rice and organically-grown fresh fruits and vegetables. Beets, radishes, artichokes, cabbage, broccoli, spirulina, chlorella, kale, and seaweed are excellent detoxifying foods.

2. Cleanse and protect the liver by taking herbs such as dandelion root, burdock and milk thistle, and drinking green tea.

3. Take vitamin C, which helps the body produce glutathione, a liver compound that drives away toxins.

4. Drink at least 2 quarts of water daily.

5. Breathe deeply to allow oxygen to circulate more completely through your system.

6. Transform stress by emphasizing positive emotions.

7. Practice hydrotherapy by taking a very hot shower for five minutes, allowing the water to run on your back. Follow with cold water for 30 seconds. Do this three times, and then get into bed for 30 minutes.

8. Sweat in a sauna so your body can eliminate wastes through perspiration.

9. Dry-brush your skin to remove toxins through your pores. Special brushes are available at natural products stores.

10. What is the most important way to detoxify? "Exercise," says Bennett. "Yoga or jump-roping are good. One hour every day."

11. Eat organic/natural produce and meats.

[loraleena]

I agree with the cleansing. You probably need colon cleansing, liver cleansing and candida cleansing. Please look into candida overgrowth. There is a simple test to tell you if this is an issue. When you wake up in the morning fill a glass with water and spit in it. Watch the water for an hour. If the spit sinks to the bottom or has spindly "legs coming down from it, then candida is an issue. This is a pretty accurate test from what I hear. I did it on my son and it was normal. when I did it for me it had legs in about 30 seconds!! The damage to out guts set us up for problems with candida, parasites, and bacteria.