posted
Dear Everyone, I originally was not going to be able to see the GI doctor until December 1st. Last Tuesday, their office called asking if I would change the appointment due to the doctor being out of the office at that time. I agreed, and they saw me the next morning. According to the test results, he said the likelihood of me having Celiac is next to nothing. He said I could go back to eating a normal diet.
At first, I asked him again because I was stunned. He probably thought I was really thick-headed or just plain stupid. I was afraid to go back to eating a regular diet, and even nearly had a panic attack taking a couple of bites of regular food. After my Promethazine wore off, I expected to be terribly sick, but I was not. I have been eating normally and actually have felt better for the most part of the past five days.
I am not starving anymore, either! I only want a little of something, and do not need the sugar like I used to. The gluten-free diet was making the yeast worse. My reflux has improved. However, there is some bad news. My gut is hypersensitive to everything, and can have spasms. The GI doctor wants me to try Elavil, which I am nervous about.
It is the smallest dose, but it still scares me. Now, here is the real kicker. The cause of all of my health issues could be the Depo-Provera shot I have been on all this time. I did some poking around, and found out that may be why my teeth began going bad, on top of the miserable GI problems. My glucose dropping has improved as well since getting off of the gluten-free diet.
Both my cousins' wives had been on Depo as well. They too, have experienced these debilitating symptoms. The horrors never end with this drug. I am scared of going off of it, because the cysts, anemia, and excruciatingly painful heavy periods may return. Birth control pills seemed to make the cysts worse. I still need to watch my diet and not overdo the fat and avoid things that cause the yeast to flare.
Adding fiber is important, but has to be done slowly. Dr. B said your body does not like it and tends to rebel. I have been through that before, but at least now I know how to calm the situation if need be. I am no longer yelling at my family constantly. I was starving, and even was in tears one night last week. Being on this diet the past few years has been exhausting!
He also said my gallbladder area will have phantom pain. That is normal. If I had the Sphincter of Oddi Dysfunction or stones in the bile duct, I could not have gone this long and lived. That was a relief! Dr. B says that condition is overdiagnosed and ERCP is too risky to perform unless absolutely necessary.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Did you do a genetic test for celiac? Often the GI tests are not accurate.
I'm glad you are feeling better but there are concerns with the doctor's advice. I think it is ridiculous that a doctor would tell a chronically ill patient that a diet WITH gluten could help.
A diet with more complex carbs or more non-gluten whole grains - or maybe more low glycemic index foods (as with many processed gluten-free foods are still very high on the glycemic index) . . . but adding gluten to a diet cannot possibly help, in and of itself.
If you feel okay with it, fine. But it would be from the nutrition of the food, combined with calories, not the gluten itself. And that nutrition and complex carbs can come in safer ways.
Most LLMDs suggest patients avoid gluten with good reason. There is so much about how gluten affects the brain of many with chronic neurological illness that I'd sure not take the chance until feeling well for sometime - then maybe adding it in now and then.
But, it can take 6 months to get over the effects of gluten's reaction in the brain. In addition to some connection with "MS" patients, Alzheimer's patient's, too, do better without gluten.
We are just touching the tip of knowledge about how gluten affects the brain. This is not just about stomach issues - it's about dementia, too.
A gluten-free diet need not be torture. There are many fine whole grains that are gluten-free. You might want to read over the abstracts here before deciding to add gluten back to your diet:
Gluten sensitivity in multiple sclerosis: experimental myth or clinical truth
Excerpt:
. . . Our findings support the associations between antibodies against gliadin and tissue transglutaminase to multiple sclerosis. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Shosty
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I am suspicious about this GI doctor. Many mainstream GI doctors think that celiac is the only reason to avoid gluten. There are other types of sensitivities to gluten, that don't even show up on mainstream allergy testing either. Elimination for a couple of weeks, followed by challenge, is the only way to really find out.
Also, celiac tests are completely worthless if you have already been off gluten.
If going back on gluten makes you feel better than when you were off, then you have tested that well perhaps, but this MD's lack of knowledge (although, again, in the mainstream GI world he is par for the course) makes me distrust some of the things he had to say.
Have you also tried going lactose/dairy free?
As for the depo-provera, I would suggest that bio-identical progesterone cream might be helpful to you instead. You run it on every night. This can help with cysts, endometriosis, pain, migraines, and even seizures. No side effects to speak of. Some gynecologists will prescribe it: you then get it at a compounding pharmacy. Or, you can purchase it online or in stores.
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I am another one surprised (or maybe not) by the doctor telling you this. I guess it is typical of mainstream doctors to think the GF diet is unnecessary and a fad. I am unaware of a test that is accurate after being GF for a few years, though, so I am not sure what test he could have done.
Even the genetic test doesn't tell the whole story because it is something like 98% of the people with celiac will have the genes. There are still the remaining few that don't. Not to mention the whole issue of non-celiac gluten intolerance.
However, it is hard to argue with feeling better while eating gluten. I guess time will tell with you again feeling worse, if you really do need to avoid it.
What made you decide to go on the GF diet and how did you feel when you first started it?
Posts: 984 | From US | Registered: Dec 2007
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Jin, so glad you have gotten some good news and you are feeling better!
I'd go ahead and get off the Depo. Try to get to the root of what's causing those feminine problems. Contraceptives can hide the problem, but don't fix the cause of it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Dear Tincup, Yes, my spirits are much better! I agree that people going on the Gluten-free diet thinking it will make them thin is absurd. I have definitely been enjoying some things I thought I would never be able to eat again, but told myself to not overeat. There are still major limitations with the yeast, but I am not wanting near the sugar or starchy carbs now. This is huge for me!
Dear Keebler, I have not had the gene testing, but will when I can afford it. The trouble with the gene test is, it only tells if the genes are present, not whether they are active. A large amount of the population carries the genes for Gluten Intolerance and/or Celiac, yet only 1 percent of them go on to develop Celiac. You have to wonder why they cannot or do not do this for such a dangerous illness.
I know they can do it for Bipolar Disorder, because a family friend had it done. I do agree research on gluten has proven it to be hard on the neurological system in the general human population. Some researchers even believe we were never meant to consume grains in the first place. Dr. Barry Sears (author and creator of The Zone) is one of them. He states in his book that there was no evidence of obesity or Heart Disease until the introduction of grain into our diet about 10,000 years ago. Another interesting fact is that the ratio of obesity in ancient Egypt is equivalent to that of the United States today.
The test I had done was a blood test, which was negative. This was prior to my going gallbladder being removed. The test was done in late 2000, and I was definitely eating gluten then. Dr. B explained that Anti-Gliadin is not the one they look at as much for the disease, it is actually the Anti-Tissue Transglutaminase that is looked for. I am very aware that you can be intolerant to it, and that is why I was on such a strict Gluten-Free diet for the past three years. I also still avoid lactose.
At this time, whether or not I have Lyme is still uncertain. The Western Blots were not very definitive, since I had only one positive band and two indeterminate ones. More testing is needed to find out more, but having no insurance makes that impossible right now. Antibiotics are certainly something that irritates my situation due to a large amount of yeast. I finally seem to be killing it off some now that I am not eating so much starch from potatoes and rice.
The illnesses gluten is related to are numerous. All the research I have done definitely makes things clear. If a person is reactive to it, they will experience some long-lasting impact until it completely leaves the system. I actually have been concentrating better since eating more normally, probably because my glucose is not dropping. The faint feeling has improved a little as well.
Thank you for the articles. I will certainly read it. They will be very interesting. I am not leaving the Gluten-Free world behind. I would like to advocate for people with Celiac and Gluten Intolerance. I hope to get a Gluten-Free food program going and some emergency preparedness steps for people on special diets.
Dear Shosty, I agree that most GI doctors are completely clueless. Of all the doctors, they tend to be the most egotistical and the least informed. Dr. B had recently attended a conference on Celiac. That is more than many of the ones I have been to before (and I have seen a lot) have done. The testing I had done before was sent all the way to a special lab in San Juan Capistrano in late 2000, when I was still eating gluten. It was a part of the University of Maryland study they were doing at the time.
I was strictly Gluten-Free for more than three years. I honestly believed it would make me violently ill upon a microscopic amount being ingested. I was stunned when I actually felt better! This yeast was being fed on the Gluten-Free diet, and I think that is what it was. I was constantly eating a ton of sugar and potatoes to get my glucose up. Fruit and other foods just did not help for some strange reason.
I have been lactose-free for the good part of the three years. I still avoid that, unless I take a supplement like Lactaid. I do fine with those, but dairy is also bad for a lot of other reasons. I try not to eat it much. Right now, I am using organic rice milk. Some other switches I need to make for the yeast include soy cheese instead of regular, and almond butter in place of peanut butter.
We do have a compounding pharmacy here. My mother is getting a hormone profile done, and wants me to do the same. I definitely will once money is available for it. The progesterone cream is something I have heard a lot of good things about. Natural is always better, no matter what you are using.
Dear jkmom, The test was performed way before I went Gluten-Free. It was in 2000. I definitely think he is right about the hypersensitivity, because it seemed nothing makes a difference. I do feel the yeast is to blame for some of it. We also have mold in the house, which may contribute or cause a lot of my trouble due to having Candida.
I wish the genetic test told if the genes were active. That is the irritating part. They may be present, but not active. A friend of mine has a husband who has both a Celiac and a Gluten Intolerant gene, yet does not react to gluten. The body is a very strange thing at times.
So far, things have improved a lot. The reflux particularly has gotten so much better. It was getting to the point the slightest thing like plain baked chicken and mashed potatoes with nothing in them would make me feel as if I had swallowed Hades. I actually even ate something with vinegar the other day, and did not get reflux or heartburn. That has never happened before!
Originally, I tried the Gluten-Free diet in August of 2006 after my Primary Care Physician said the blood tests are not necessarily accurate. She said you could still have a severe intolerance even if you do not have Celiac. I tried it for a few days, and things improved for a while, but then got worse again. I really did not want to return to a regular diet at first, because I was just too scared. Now it appears I am not reacting to it at all. No one was more surprised than me.
Dear sixgoofykids, It was certainly nice to get some good news for a change! Boy has there been way too much bad news this year. The Depo scares me. I know my hormones have always been out of whack, and that these issues run in our family. A hormone profile could be very helpful.
I do not like the contraceptives because of the side effects. My mother said she got sick from the pills, and they made her gain weight. She is going through a terrible time with menopause, and knows that my issues will likely be revealed with a hormone profile. She is getting one done, and it will be interesting to find out why she is suffering so much. All of the women on her side of the family had hysterectomies young, and I am so afraid I will be next.
posted
Jin, there are two tests that can test if gluten does something, one is the freshly activated T cell test, and the other is incubating a biopsy sample with gliadin. Only celiacs will have a positive response to those tests. But they are not tests one normally gets.
For the freshly activated T cell test one only has to be gluten free for one week. One must eat gluten for three days for the test. It is just a blood test.
Posts: 366 | From Europe | Registered: Nov 2008
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Dear n.northernlights, Can you provide a link for the Activated T-Cell test? Which lab does this one? I have no insurance at this point, but hope to get something definitive done in the future when possible financially. I had an endoscopy done in 2001, and as far as I know, they found nothing out of the ordinary. However, I would like to double-check on the villi biopsy.
Dear shelly23, The birthcontrol can aggravate yeast, so it could be a combination of side-effects and Candida. Anything that changes your hormones will contribute to an overgrowth. My symptoms often have been severe, with debilitating nausea, reflux to the point I was practically sitting up when sleeping despite changing my diet and taking Prilosec twice daily, pain in my stomach where my gallbladder used to be and elsewhere, and extreme pain in my lower abdomen. The last symptom was not constant, but was so bad when it did hit that I thought my appendix was rupturing or something.
I hope that helps you. Bloating is another symptom I have struggled with on top of forceful, loud belching that has often been painful. This shot was something I felt I had to go on, and am afraid of going back to anemia and the other problems I had before. At the same time, staying on it is just too dangerous. It is difficult to deal with hormone issues, because the treatments rarely actually get to the root of the matter.
You can find some OTC pills in drug stores that stop those long and heavy periods. Can't remember the name - sorry! - but you could ask your druggist or Dr. to check in the PDR (Physician's Desk Reference.) They will if you keep asking and being persistent during your apt.
Another thing that stopped the heavy periods was taking large amounts of ibuprophen; works great. I'm not sure if you should though, because it can cause stomach problems. I didn't know that at the time and the dr. sure didn't tell me.
In the PDR, my dr. found an iron supplement, Niferex Forte, that was very easy to tolerate and did not cause constipation as most iron supplements do.
I take Elavil as needed for sleeping. Only mild symptom I have had is dry eyes in the morning, but if I drink lots of water during the day before taking the pill, that symptom is not present. I take it at 6:00 pm, as it takes about 12 hours to wear off, so I'm not groggy when I wake up. If you forget and take it later, say 7:00 - 9:00, it's not much of a problem. I take 1/2 to 1 10 mg. tablet.
I hate taking drugs, but in my experience, Elavil is a very mild drug with no problems at all.
Hope you feel better!
Posts: 97 | From Great Lakes state | Registered: Jul 2008
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Dear twinkle, Will the pills help with the cramps? I am going to check those pills out! Maybe my friend who works at the healthfood store can help with that. They are very aware of all kinds of wonderful things. These people are not just there to sell something, which is good.
Ibuprofen is something I avoid, since it does not set well with my stomach. I am terrified of NSAIDs since my grandmother had an ulcer the size of an orange from taking them. Iron supplements never set well with me. They always make me queasy. I have the same trouble with zinc, so when I get a cold, I cannot use the lozenges. I am scared of Elavil, but it makes me feel better learning of your experience. The doctor wants to use it to help calm my colon spasms.
Division of Gastroenterology and Hepatology, Mayo Clinic College of Medicine, Rochester, MN, USA.
Celiac disease is a common (1% prevalence) chronic immune-mediated disorder of the small intestine induced by dietary wheat, barley, and rye.
Several hepatic disorders have been described in association with celiac disease. Isolated hypertransaminasemia with nonspecific histologic changes in a liver biopsy is the commonest hepatic presentation of celiac disease.
A gluten-free diet normalizes liver enzymes and histologic changes in most patients.
Moreover, celiac disease can coexist with autoimmune liver disorders such as autoimmune hepatitis, primary biliary cirrhosis, and primary sclerosing cholangitis.
Celiac disease has increasingly been reported with a variety of other liver diseases.
Thus, the hepatologist needs to consider celiac disease in the differential of abnormal liver blood tests and to be aware of the clinical implications of this frequent disease in patients with liver disorders.
. . . .
PMID: 17969053 [PubMed - in process] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Dear Keebler, They did not mention oats. Those tend to be a problem for Celiacs and those with Gluten Intolerance. Thank you for the link and article. I always had normal liver enzymes, even when my gallbladder went bad. Gallbladder issues do run in the family, and I know there is a connection to Celiac and Gallbladder Disease. Until I can afford more testing, I am not going to know anything for sure. Candida is a major issue for me, and do think the Gluten-Free diet made it worse due to all of the starch I had to eat to keep my glucose up. I could not afford any of the special foods most of the time, since we are on an extremely tight budget.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Jin,
Good to add the reminder about oats for some.
I wonder if you are familiar with the gluten-free whole grains such as: amaranth , both regular and red quinoa ("keen-wa"), millet, buckwheat (really a legume) and wild rice (really a grass) - as well as many varieties of brown, red and black rices? Chinese Forbidden Black RIce is fabulous in its rich, dark color.
These are all fine regarding the gylcemic index and are gluten-free. I've been gluten-free for 15 years and these grains keep my blood sugar from dropping too low but they are not really starchy. Most foods with gluten would be much more starchy.
However, there are many processed / packaged foods or even mixes marketed to be gluten-free but are very high on the glycemic index due to refined grains. Wonder if that's what you meant.
Whole grains from the list above, in moderate amounts with lots of veggies and protein, provide more stability for blood sugar as they take longer to digest. They also have more nutrients.
They would be far less starching than grains containing gluten, primarily as those gluten-containing grains are never eaten as "whole" as those on the list above (aside from barley added to soups). Wheat and rye are always presented in starchy forms.
Guess I'm not sure why your doctor thought eating gluten would cut down on your starch if you were eating whole grains. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Dear Keebler, I am familiar with those grains, but cannot afford them. I have seen Martin Yan cook the black rice. It is interesting. Maybe someday, I will get to try some. For now, I have little I can afford.
Refined carbohydrates are terrible. No one should eat them at all. Not only do they wreak havoc on blood sugar, but contribute to Diabetes, Heart Disease, and so many other illnesses. Yes, you are right that I meant the prepackaged gluten-free items could be high carbohydrate and not necessarily good for you. I have been making an effort to avoid junk food for the most part.
I got some Greek yogurt that is fat-free and added some dates and walnuts. It was delicious! I have to be careful and take supplements for the lactose issue, though. Unfortunately, it does not look as if I am going to be able to get that very often due to how expensive it is. Organic food is really a rare treat for me.
I need to watch the vegetables. The other day I got some nasty gas and cramps from eating two cups of broccoli. The cramps I had with the bean sprouts nearly killed me the other week. All of those are high in sulfur. It was interesting that you said buckwheat is a legume, because the list I had classified it as something else. I believe it is related to rhubarb.
Dr. B said the testing I had done many years ago revealed that Celiac is highly unlikely. This was a relief, and would explain why I did not improve after so long. In fact, the bloating, reflux, and stomach pain was actually worse on the gluten-free diet after a while. The yeast is everywhere, which would explain why I do better with the whole grains. I have been eating oatmeal a lot lately, and sweetening it with agave nectar.
It even helped me sleep a little better. Dr. B wants me to add fiber, so I am doing this slowly. A prescription for Elavil is another thing he wants me to try for the cramps. I have not needed near as much sugar since eating more normally. However, I agree that overkill is not a good idea. Everything is about balance.
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