KarenLee

THANK YOU so much! That list is great!

I am traveling from Texas to Chesapeake, VA. This may be a long shot, but can anyone give me any direction/ideas for a good place to shop/restaurants to go to?

Thank you!

Karen

Hello,

This is my first post to these forums. For about six or seven years, following a major life stressor (my grandma's death, which I took very hard) I have suffered from a dizzying array of physical and mental symptoms and have generally felt unwell. In addition to depression and Generalized Anxiety Disorder, I think I may have some sort of food allergy.

My mother is lactose intolerant, and is also allergic to cheese. I am unaware of anyone in my family being gluten intolerant, although I suppose that it's possible they could be and just don't know it or don't have severe symptoms.

In my case, I feel the worst in the morning. I wake up and my neck and back muscles, especially in my right side, spasm and ache (this could be due to the fact I've carried a heavy tote bag on that shoulder for years-I got checked by a chiropractor recently and he said the muscles there were "very tense"-I initially felt better but now, after a week, I continue to be sore in that region). I also wake up congested, and the congestion usually gets better throughout the day, as I'm up and moving around. Nearly every morning, I have loose stools (not quite diahrrea) that smell bad, as if I'm reacting to something in my diet (I eat my heaviest meal in the evenings). This seems to worsen when I eat acidic foods, such as anything with tomatoes (like spaghetti sauce), orange juice (which I love, even though I feel immediate indigestion after drinking it). I also have avoided bread for years, but sometimes feel bad after eating pizza. Almost immediately after eating, I also suffer some reflux.

I am also chronically exhausted and just don't feel good. I'm 29 years old and feel like an old woman. No libido, either, and my husband is getting frustrated because we'd like to start a family, but it's hard to be in the mood when I feel such malaise... and if I get pregnant, I want to be at the best level of health I can.

I "look" healthy overall...but the dark circles under my eyes, achy muscles and lack of energy kind of "give me away" as suffering with something. I hesitate to think it could just be depression or anxiety, though these things play a role. I have this sense as though I am not being truly "nourished" by what I eat. One of my mom's friends recently told me that, in her 60s, she had just been diagnosed as celiac. My mom said to me, 'Maybe you should look into that, too." I just want some answers-I'm tired of feeling so out of it all of the time, lethargic and yucky.

Any thoughts? Has anyone experienced similiar symptoms?

I am somewhat new to all this as well, but it sounds like a visit to a GI that has experience with Celiac and Gluten intolerance would be your next step. Your fatigue, and some other symptoms I had also. I am gluten intolerant and now those symptoms are gone since my going gluten free.

I am sure someone will give better explanations/advice soon.

Good luck!

Sorry, but did you receive my message - I am new to using a forum and sometimes my stuff goes through and sometimes it doesn't...

Yes, I did. Sorry, I am on the computer more during the day than at night...

Thanks again

I never really thought about getting a non plastic filter and that is worth looking into. We are on well water in Texas, hard water where we have to add salt to a water softener, blah blah blah. Yuck in my opinion, my husband doesn't mind it. SO I drink Ozarka bottled spring water, but do worry at times about the plastic.

Nala is the dog and she is a red heeler/shephard mix, I think...I was working at a vet when someone found her and her sister wandering the lake at 10 weeks old! She's the best, and she was free!

Thanks for the info!

Thanks, I was thinking the same of yours!...looks like they could be really good friends!!

Is that Enterolab's Dr. Fine's DVD? looks worth buying...

YEs, this is true for me, as well. I have suffered from allergies since I was very young. Food, seasonal, animal, environmental, you name it. Now that I am older, and I pay more attention to what I expose myself to-putting it in my mouth or on my body. And I do notice that I am sensitive to MSG for sure. Household cleansers make my asthma flare up, too. That make sense. Where did you get the DVD?

OK, I know someone can help. I can't belive I am still confused about this.

EnteroLab told me that I am both genes gluten intolerant, do not have celiac genes. I have been gluten free since I found out(Oct.'06) and feel MUCH better. So, I told my sister to get tested(mother died colon cancer at age 49)so she (skeptically)went to Dr. in Dallas. test neg. for Celiac. He (Dr.) told her that if she was gluten intolerant, and she continued to eat gluten that she could not "get" Celiac later on. (He didn't tell her she may test neg. now, but could test pos. later) She said that he was a Dr. that does not support Dr. Fine. So, since seeing her Dr., she thinks it is not even important to get a stool test done, that it is not important if she is gluten intolerant or not! Am I wrong in thinking that if someone is gluten intolerant keeps ingesting gluten, that, even if they "feel fine"(with osteopenia and hypothyroidism)their health will delcine, that the gluten will cause them problems?? In the end, she is an adult and I cannot make her do anything...

thanks for reading..

I found out through Enterolab that I am gluten intolerant and not celiac. I carry 2 of the G.I. genes. I have not gotten the biopsy because my Dr. said that I didn't need to if my blood test was neg. Plus, I do not have insurance...

SO--- I am encouraging my sister to go to the Dr... She has an appt. tomorrow. She was wondering (and very skeptical) what she should tell/ask the Dr. She wanted to take my Enterolab report with her. I don't even think she is going to a GI type of Dr. She is skeptical of Enterolab. She is only going to the Dr. to appease me. She is 6 years older and she have osteopenia and is hypothyroid.

ANy suggestions?

Thank you!

THis is all such great information and advice, thanks so much. I don't think I could go gluten-free without this support. (Well, I could, but it would SO much more difficult, with much more tears!) I am planning on buying Dr. Green's and Braly's books today, I hope it is at one of the "regular" book stores...

Thanks again

Thanks a lot. that helps me feel better. It just made me cry when my DH said that I don't even have the disease and how in the world could a speck of wheat hurt me? He was in big trouble. Of course the kids were listening in. this was all after buying a new toaster just for me.

Anyway, thanks again!

Karen

It took just under 2 weeks for me. I got the gluten and gene test..only took 3 days for the package to arrive. I wasn't expecting it for another week, then one night I checked my e-mail before bed, and there it was! It was a shock, even though I knew what the results were...

Good luck...

I am sorry, I bet this was answered somewhere, but my family is being insensitive to my going gluten free. If Enterolab test were pos., and I have gluten sensitive genes, but my blood is neg., then do I have Celiac? The blood tested antibodies for Celiac-none were found. I am confused. Maybe my family will accept it all more if I did say I have Celiac. I apologize if that sounds insensitive.

Thanks,

What does this part of the results mean?

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0603

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

I read the description, but still not sure. It says that I "do not posess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8)." So I do not have Celiac??

By the way, if it helps, here is the rest of the results:

Fecal Antigliadin IgA 36 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 17 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 73 Units (Normal Range <300 Units)

Fecal anti-casein (cow

A long time ago, an allergy Dr. told me that alcohol enhances the allergic reaction. For ex.-when I ate corn chips(allergic to corn) and a margarita, I would get asthma.

I would also like to know the very best way to get tested for food allergies. I know just by my own "testing" what I am allergic to, but I need an "official diagnosis", I guess.

I hope you feel better, soon!

Just to echo what others have said - ranges differ lab to lab, there are so many (over 200) possible symptoms with celiac that it's been called "the great chameleon", and get a copy of that bloodwork.

I had negative bloodwork twice, years apart, before being dx by biopsy.

My GI Dr. said that if my Prometheus blood test comes back normal(I hope to get results back tomorrow), then there's no need for a biopsy, that we will assume that I don't have Celiac. If it comes back normal should I insist on a biopsy, too? I have read that so many people have neg. blood tests, but had pos. biopsy results. Oh, I also sent in the test to Enterolab a few weeks ago...

Thanks

My mother had mental problems(In early 70's, Dr.'s first said schizophrenia, then years later, manic depressive). At age 49, she died of colon cancer that had spread to her liver! Hmmmm..I wonder if she had Celiac all along!!?

Above, I said, ""Americans need to be more aware.""

Sorry, This has been bothering me. Of course, this should say, The whole world needs to be more aware!

Austin, Texas

Dr. Craig Lubin

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My grandmother has dementia, her father (my great-grandfather) did too. It's very probable that my mother will also develop dementia. I'm already scared that it'll happen to me as well....

Do you know if there's somewhere I can read/watch the clip?? What news program was it??

Here is an article that someone on this site/board posted, and I can't remember who it was, or what topic, even! I'm telling you, I have such a foggy brain like this all the time, sorry... but here is the article she posted: (I happened to have copy and pasted it in an e-mail that I just sent to my Dad who has a wife with dementia...)

Celiac Disease Linked to Dementia

Gluten-Free Diet May Reverse Mental Decline in Patients

By Salynn Boyles

WebMD Medical News

Reviewed By Louise Chang, MD

on Friday, October 13, 2006

Oct. 13, 2006 -- Adults who develop the digestive condition known as celiac disease appear to be at increased risk for dementia , according to new research from the Mayo Clinic.

Celiac disease is a disorder caused by an immune reaction to eating gluten, found in some grains such as wheat, barely, and rye. Damage occurs to the inner lining of the small intestine. Classic symptoms include chronic diarrhea, weight loss, cramping, bloating, and gas.

About 10% of celiac patients have some neurologic symptoms, such as numbness and pain. But a link to dementia and other forms of mental decline has not been widely reported.

Mayo Clinic neurologist Keith A. Josephs, MD, MST, tells WebMD that he first made the connection when examining a patient suspected of having the fatal brain disorder Creutzfeldt-Jakob disease (CJD).

The patient did not have CJD, but he did have celiac disease. He also had rapid-onset dementia, which coincided with the onset of diarrhea and other well-recognized symptoms of the digestive disease.

"I wanted to find out if the dementia was related to the celiac disease," Josephs says.

Gluten-Free Diet Reversed Dementia

Josephs and colleagues including William T. Hu, MD, PhD, examined the medical histories of 13 patients who showed evidence of serious mental declines within two years of developing symptoms of celiac disease.

The patients were between the ages of 45 and 79, and their average age was 64.

In five cases, celiac symptoms and mental decline occurred simultaneously. Two of the patients also recovered mental function when they followed gluten-free diets, and mental function stabilized in one patient.

Avoiding wheat and other gluten-containing grains is the main treatment for celiac disease.

"This is a big deal," Josephs says. "It is almost unheard of to see a reversal in dementia or cognitive decline."

The next step, he says, is to try and figure out the connection between celiac disease and mental deterioration. One theory is that the immune response to celiac disease attacks the brain. Another is that the disease causes inflammation within the brain, which triggers dementia.

Mayo clinic gastroenterologist and celiac disease expert Joseph Murray, MD, says he was surprised that the link was so strong.

"I was not expecting that there would be so many celiac disease patients with cognitive decline," he said.

Celiac Often Misdiagnosed

Celiac disease is common, occurring in about one in 133 people, Murray says. But it is often misdiagnosed or missed altogether due to the vague nature of the symptoms.

The new findings give doctors an added reason to identify patients with celiac disease and to treat patients who have been diagnosed, the researchers conclude.

That means ruling out celiac disease in patients who have atypical forms of dementia and being watchful for mental decline in celiac patients.

--------------------------------------------------------------------------------

SOURCES: Hu, W.T. Archives of Neurology, October 2006; vol 63, online edition. Keith A. Josephs, MD, MST, neurologist, Mayo Clinic, Rochester, Minn. Joseph A. Murray, MD, gastroenterologist, Mayo Clinic, Rochester, Minn.

© 2006 WebMD Inc. All rights reserved.

I heard that on the news, but only caught part of the story, thanks for sharing that.

I noticed that you used Prometheus for your blood work, so did I. How long did it take for you to get the results?

Thanks,

Karen

I saw on a major news channel a quick 15 second clip about how people with Celiac disease have a greater risk of dementia. I was getting the kids ready for school and didn't hear the entire piece...BUT, Too bad it didn't go into exactly what Celiac disease is--symptoms, etc.! Americans need to be more aware. I think is greatly underdiagnosed.

Karen

Hi,

I'm sorry about your sleep problems, hope this helps. This is just my advice that I would give a friend...I posted it on another board(topic) as well. This is a link to a site that can help with sleep problems as well as focus issues. She is a clinical nutritionist here in Austin(where I live) but you can be tested through the mail !!...they send you a test kit, you supply the sample and mail it back in. Then, they e-mail you the results. What the test told me, was that I had an imbalance of Serotonin (and a few others..) which was causing me problems-- mainly, sleeping. I began taking what she recommended, (a combination of certain amino acids and minerals) and now I sleep much better, also, I was acutally able to get off the drug fluoxitine(Prozac).

I had 2 of my children tested, and they are benefiting from the amino acid therapy, and sleeping better also! Yeah!

Good luck!

Karen

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I have had the same pain, I am not Celiac diagnosed, but am waiting on Enterolab test and blood test(from my GI Dr.) results to come in. I frequently wake up in the middle of the night with stomach pain, and can't get in a comfortable position. The pain is in the center of my stomach area. I also will wake up with stomach pain, in the morning.

I used to take Fluoxitine (Prozac) for depression, but the nurse prac. that I go to now has more of a Holistic approach rather than a pharmaceutical one. She advised me to have my brain chemistry tested (through a urine test!)and now I take an amino acid/mineral combination that helps me fall asleep/stay asleep tremendously. It has also helped my depression somewhat. The prob. was that my brain's serotonin was off balance...

Good luck!, hope things are better by now...

Check this link out if you are interested about amino acid therapy.

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Karen

Hi...I am new, but my symtoms are not. I am 43, with many symptoms listed on other posts. A very good friend was diagnosed a few years ago and thought my symptoms sounded similar...I am wondering if I should just order the test from Enterolab- if that seems to be the test to order as the last step(because of false negatives w/blood). I have no insurance and was wondering if a Dr.'s viisit was necessary. I have been told I prob. have IBS...I have normal colonoscopy test results (my Mom died at 49 of colon cancer...hmm, I wonder if she had it and didn't get diagnosed.) Any opinions are appreciated. Thanks, and what a great site.

Karen