Jump to content
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

deannatx

There Is Stupid And Then There Is Stupid!

Rate this topic

Recommended Posts

I live in Victoria, Texas, which has the worst doctors on Earth..and the highest # of cancer patients in Texas..so it's almost impossible to get a PCP, much less get into a specialist. I go to a GP at a clinic that does mostly pre-employment physicals and don't require appointments because I couldn't find another doctor taking new patients here that wasn't a complete homicidal maniac (can you tell I'm not from Texas??) He's a caring man, but he's a few cans short of a six pack (grin). I have to watch what he prescribes like a hawk.

I was 'diagnosed' with Chron's by a GI in Oregon in 1981, but I'm fairly sure it was a misdiagnosis. I have had overweight problems most of my life..I yo-yo'd like most people did, hit a high of 283 (only 5'3" tall) and finally got serious about losing weight in 2002 and went down to a size 10 and stayed there for several years.

After the removal of a gangrenous gallbladder in 2006, I never really felt right again. I started experiencing diarrhea worse than it had been for 20 years. I shot back up to a size 20 (sigh), I was tired all the time, in pain and grouchy. I had serious sleeping problems. We moved to Texas from San Diego (don't ask why, ugh) and I only got worse because of the hideous weather here. I just stopped going out.

A lot of other stressors like a failed business led me to a therapist and a diagnosis of Bipolar II. I read a book by a wonderful psychiatrist, James Phelps, who suggested a diet free of simple carbs of any kind and plenty of whole grains, plus exercise, because there is anecdotal evidence that metabolic syndrome and lack of exercise are a huge contributing factor to Bipolar symptomology. Within 3 days I was free of mood swings and feeling like a normal human again. I've lost 47 pounds since May and my Wii Fit is jumping for joy (grin).

BUT..for the first time in my life, I was eating whole grains and my gas, bloating and diarrhea became unbearable a few weeks ago. I didn't really have any problems for the first couple of months. I also developed a horrible pain in my left lower abdomen..I suspected maybe it was Diverticulitis...back to the doc. Ran blood tests, the usual suspects all came back normal, except for a slightly elevated white count (no fever) and mildly high calcium levels.

So ordered even more tests and literally pulled out his medical books in front of me to try to figure out what I might have. He said he suspected Celiac and/or Hyperparathyroidism, so ran tests for both, but he 'didn't know' that I should have been eating a lot of gluten before the tests were run and I wasn't because I suspected that the whole grains were contributing to my problems. My diet had changed so dramatically, I suspected it might be that. I'm not a big sandwich person, but eating whole grain crackers & English Muffins, Cream of Wheat and the occasional burger on whole grain breads. I was also eating a lot of brown rice, which has no effect on Celiac, but would if I did have Chron's (so confusing!).

Everything came back normal except for one antibody (I need to get a copy of the results, he forgot to give them to me the other day). All I remember right now is that 3 antibodies were negative and one that had IgA in it was elevated.

He referred me to a Gastroenterologist who can see me in only TWO MONTHS...and sent me on my merry way, saying, well, you know almost as much about this as I do and I know you are a pro on the internet, look it up. Gee, thanks, Doc.

I've been wandering around reading up on Celiac and nothing is making much sense to me. I've found the lists of things I can't eat and I've eliminated the things I found on various lists...checked the ingredients on my lip balm, etc. I can live without bread, but I am grieving over my Lancome lip glosses, lol.

The thing is..there is no history of this or any of the other diseases that generally predispose people to Celiac in my family history and I know it going back 3 generations on both sides. I have asked my GP to order the Promethius Celiac Plus test, both the serology and the genetic testing. Hopefully my insurance will cover the $800 price tag for that.

I guess after all this rambling, what I'm trying to say is...with only 1 of 4 antibodies coming back positive, no family history and the ONLY symptoms that match being those that COULD be IBS or many other gastro problems...do I have this or not?? I guess I'll find out when we re-run the tests or do the Promethius Plus.

I am already following what is a modified Metabolic Syndrome Diet for the Bipolar, which keeps me off those horrid meds, but adding the celiac diet to it pretty much dooms me to NO sweets of any kind (with only VERY limited fructose, I shouldn't have more than about 15g of sugars per day), no corn, no peas, no white rice, no potatoes, carrots, milk, etc. I won't even go into my reluctance to toss out $300 worth of cosmetics. There is virtually nothing I could order in gluten-free foods that wouldn't 'break' one diet or the other. Let's see..do I want to be able to eat a cracker or be manic?? Great choice.

My hubby has to avoid cholesterol, which further limits what we eat. Am I doomed to fish, skinless chicken and turkey with plain veggies? Arrggh. Somehow or other, two months seems like way too long to live like this.

If I have Celiac, so be it, I will adjust my mindset and learn to live with it, but if I don't, let's hope my diet keeps me from drop-kicking my doctor across the room if he was wrong.

I'm a big fan of second opinions, if you can find someone to give you one!

Share this post


Link to post
Share on other sites

Hi,

I am no expert on the tests, but there are people on the forum who seem to know them pretty well. You might want to post your test results in the pre-diagnosis testing area and ask for help interpreting them. Or search some of the other threads on test results. There are several antigen tests, and I haven't read anything that says you need a positive result on all of them to indicate celiac.

That's too bad about rice. I have read some people saying they plan to use quinoa instead. Quinoa is probably more nutritious anyway.

Share this post


Link to post
Share on other sites

I guess I'll add that if gluten is the problem, you may actually find that some of the foods you are currently avoiding can be enjoyed again. With regard to rice, it sounds like you are avoiding white rice, but would brown be ok? There are many different varieties of rice besides the typical long-grain brown rice. Also, there are plenty of other whole grains besides rice and corn, that are gluten-free. For instance, amaranth, buckwheat (no relation to wheat, and not technically a grain), millet, and teff.

The limitations you've outlined suggest a problem with sugars, and many times that can indicate an intestinal yeast overgrowth AKA candida. Doctors are traditionally biased against believing that too, so you may want to search this board or Google to find more information. Candida is a problem for many on this board, so it wouldn't surprise me. Both gluten and candida can cause neurological disorders too, so it's worth considering.

As for "IBS", I wouldn't be the only one to tell you it's a junk diagnosis. Like many health problems, the cause of irritable bowel is not commonly known (or recognized). The members of this board know better than that.

When you say the doctor didn't know you needed to be ingesting gluten for the tests to be more reliable, that suggests you had been on a gluten-free diet. However, you also mention eating English muffins and cream of wheat, etc, which absolutely do contain gluten. If I've misinterpreted, please clarify.

Bottom line, I believe that no matter what the tests say, you should try the gluten-free diet. It is also advisable to avoid dairy at the same time, as it is very common to present problems at first, until the gut heals enough to digest it. If you feel better, then that's what really matters. I'd also look into the possibility of a candida problem, which is certainly treatable.

You've come to the right place for answers, and I'm sure you'll get plenty.

Share this post


Link to post
Share on other sites

IBS is a SYNDROME. A syndrome is not a disease, it's a collection of symptoms "of unknown cause."

Compare the lists of symptoms for IBS and celiac.

They are identical.

Most patients with IBS were never screened for celiac.

I believe the term IBS was coined not by doctors, but by the pharmaceutical industry so that they could sell expensive prescription drugs to "manage" the symptoms. They don't make any $$ if you change your diet and all symptoms go away.

I'm glad you found your way here--I hope you find all the answers you are looking for and start to feel better soon (like, yesterday)!

You don't need a doctor's permission or any blood test to try a gluten-free diet. If all your symptoms, or even most of your symptoms go away, you have your answers and don't need to deal with the horrible medical system in your area.

A couple of words of caution: most of us here found that we had to go dairy-free in the beginning, as well as avoid most of the gluten-free substitute breads, cookies, etc., until our damaged tummies healed. Some here have many food intolerances, or other issues as well, such as Lyme disease, mercury toxicity, and candida infections.

Also, if your symptoms don't resolve on a gluten-free diet, you will need to undergo further testing. And once you've been off gluten for a while, all gluten-related tests are invalid, as you need to be eating 3-4 pieces of bread or the equivalent daily for 3-4 MONTHS for the tests to be reliable. (If you're not eating gluten, you don't make antibodies to it, and that's what the tests are for._

Share this post


Link to post
Share on other sites

Hi there. Not all Celiacs make every antibody. The only Celiac-related antibody I ever test positive for is antigliadin-IGA, and I definitely have Celiac Disease (history of dramatic unintended weight loss, dermatitis herpetiformis, mouth sores, miscarriages, etc.). My 7-year-old son makes all the antibodies. Not sure if this helps or not. Good luck with your future tests.

Share this post


Link to post
Share on other sites

I wanted to add...if you have metabolic syndrome or problems with your sugars, you might find that the gluten-free diet helps you with some of that (especially if gluten is the root problem). My cousin is a Type 1 diabetic who discovered later in life that he is also Celiac. He said going on the gluten-free diet helped him get much better control of his sugars. Might want to check this board for other peoples' experiences with mood disorders, bipolar, etc., as it seems like there are others here. There are some here who watch their glycemic load, too - so hopefully you can find some food suggestions. I was completely grain free (no corn or rice in addition to gluten) for 6+ months.

Share this post


Link to post
Share on other sites
IBS is a SYNDROME. A syndrome is not a disease, it's a collection of symptoms "of unknown cause."

Compare the lists of symptoms for IBS and celiac.

They are identical.

Most patients with IBS were never screened for celiac.

I believe the term IBS was coined not by doctors, but by the pharmaceutical industry so that they could sell expensive prescription drugs to "manage" the symptoms. They don't make any $$ if you change your diet and all symptoms go away.

I'm glad you found your way here--I hope you find all the answers you are looking for and start to feel better soon (like, yesterday)!

You don't need a doctor's permission or any blood test to try a gluten-free diet. If all your symptoms, or even most of your symptoms go away, you have your answers and don't need to deal with the horrible medical system in your area.

A couple of words of caution: most of us here found that we had to go dairy-free in the beginning, as well as avoid most of the gluten-free substitute breads, cookies, etc., until our damaged tummies healed. Some here have many food intolerances, or other issues as well, such as Lyme disease, mercury toxicity, and candida infections.

Also, if your symptoms don't resolve on a gluten-free diet, you will need to undergo further testing. And once you've been off gluten for a while, all gluten-related tests are invalid, as you need to be eating 3-4 pieces of bread or the equivalent daily for 3-4 MONTHS for the tests to be reliable. (If you're not eating gluten, you don't make antibodies to it, and that's what the tests are for._

Share this post


Link to post
Share on other sites
IBS is a SYNDROME. A syndrome is not a disease, it's a collection of symptoms "of unknown cause."

Compare the lists of symptoms for IBS and celiac.

They are identical.

Most patients with IBS were never screened for celiac.

I believe the term IBS was coined not by doctors, but by the pharmaceutical industry so that they could sell expensive prescription drugs to "manage" the symptoms. They don't make any $$ if you change your diet and all symptoms go away.

I'm glad you found your way here--I hope you find all the answers you are looking for and start to feel better soon (like, yesterday)!

You don't need a doctor's permission or any blood test to try a gluten-free diet. If all your symptoms, or even most of your symptoms go away, you have your answers and don't need to deal with the horrible medical system in your area.

A couple of words of caution: most of us here found that we had to go dairy-free in the beginning, as well as avoid most of the gluten-free substitute breads, cookies, etc., until our damaged tummies healed. Some here have many food intolerances, or other issues as well, such as Lyme disease, mercury toxicity, and candida infections.

Also, if your symptoms don't resolve on a gluten-free diet, you will need to undergo further testing. And once you've been off gluten for a while, all gluten-related tests are invalid, as you need to be eating 3-4 pieces of bread or the equivalent daily for 3-4 MONTHS for the tests to be reliable. (If you're not eating gluten, you don't make antibodies to it, and that's what the tests are for._

Share this post


Link to post
Share on other sites

I am going to a GI doc in 2 weeks, what do I ask? How accurate are the blood tests for celiac? or should I say how inaccurate are they? I was told I have IBS after 4 years of symptoms and 2 colonoscopies. I tried every elimination diet I could think of but nothing seemed to work. I went gluten-free for a couple of weeks and thought (or maybe it was the placebo effect) I was feeling better, but then I thought I'm not very disciplined so I better find out for sure and go to the doc. All I know is I'm sick and tired of being sick (D) and tired.

I've been looking online, and it sure seems like my symptoms line up with celiac, so if you have any suggestions on what I should know before I go or what to ask I'd appreciate any advice.

Share this post


Link to post
Share on other sites
Hi there. Not all Celiacs make every antibody. The only Celiac-related antibody I ever test positive for is antigliadin-IGA, and I definitely have Celiac Disease (history of dramatic unintended weight loss, dermatitis herpetiformis, mouth sores, miscarriages, etc.). My 7-year-old son makes all the antibodies. Not sure if this helps or not. Good luck with your future tests.

That's interesting... my blood test included total IgA, TTG and EMA, but not anti-gliadin. Hmmm...

DeannaTX --

You say there's no history of celiac in your family... what about autoimmune disorders? I didn't figure out I was intolerant to gluten until I was diagnosed with autoimmune hypothyroidism. Autoimmune disorders often cluster together... celiac is a disorder where your immune system mistakenly destroys your intestines. I don't know that anyone in my family has been diagnosed with celiac or "gluten intolerance," but there are LOTS of other autoimmune disorders (diabetes, hypothyroidism, lupus, fibromyalgia, etc...). I'm having a genetic test done to see if gluten intolerance might be the root cause of these problems.

Share this post


Link to post
Share on other sites

If you've got metabolic syndrome you might find avoiding all grains and starches and sugars are really helpful to controlling it. I know a lot of insulin resistant people, and diabetics, all controlling their disease using various low carb diets.

Personally, I'm sold that The Paleo diet is very healthy. It has helped me immensely with my autoimmune disease.

Share this post


Link to post
Share on other sites

Even if you are only making one antibody against gluten, that's pretty clear that you then SHOULD NOT EAT GLUTEN.

"Normal" (as in non-celiac) people do not make antibodies against gluten.

Share this post


Link to post
Share on other sites

I have Crohn's Disease and in the last year, I have had what seemed like uncontrolled symptoms of celiac disease. Some research led me to suspect Celiacs. So far Celiac Disease has not been confirmed by two sets of blood tests BUT I will echo what my GI doc told me: "If it bothers you, avoid it." For me, over a few months of trial and error, I am convinced that I have at least gluten sensitivity to some degree and probably some issues with dairy. So, can I call myself a Celiac? I guess that depends on who you ask, but I am feeling tons better. Bone aches, head aches, fatigue, major gas and bloating, mood all much improved. Gluten and casein are two of the hardest proteins to digest and you don't need them in your diet.

The label doesn't mean as much as feeling better. Keep exercising! Do research. Limit your diet and add in new things after you discover what works. It's boring but hopefully you will learn what works for you. Good luck!

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • May 29, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • June 01, 2019 Until June 02, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
    • July 07, 2019 Until August 03, 2019
      0  
      For more information, visit www.kefss.com or call (407) 255-6550. info@kefss.com 

      KEF USA Summer Camps Announces the New KEF Gluten-Free Camp in Orlando, Florida for Youths with Celiac Disease.

      [Orlando, FL February 6, 2019]-KEF USA is excited to announce that we will offer a new 100% gluten-free camp program to give kids and teens with Celiac Disease a safe, exciting and healthy summer. KEF USA programs offer fun and unique experiences that can only be found in Orlando, Florida. Campers explore the theme parks and local attractions, make new friends, discover new interests and create memories that last a lifetime.


×
×
  • Create New...