Jump to content

Important Information

This site places cookies on your device (Cookie settings). Continued use is acceptance of our Terms of Use, and Privacy Policy.

  • Sign Up
0
nottoosoupy

Like So Many Others...

Rate this topic

Recommended Posts

So like so many others on this forum and elsewhere, i am struggling to get diagnosed.  Not sure my story helps anyone else or if anyone can offer me any advice but I figured talking about it might help someone :)  I have been having severe digestive issues for a couple of years including heartburn (never had it before in my life) and multiple, sometimes extremely urgen tand painful trips to the john.  I complained to my regular nurse practitioner whose answer was to take omeprazole.  That kept the heartburn pretty well in check but the rest of the rumbling continued.  I basically stopped processing food in my gut.  After a year and a half of this, I got really frustrated with the medical response (basically nothing) and decided to go on an elimination diet.  Backing up just a little bit, I have always struggled with my weight but in the last 6 years I have gained 45lbs.  It has yoyo'ed up over the last two years and I have done so many things, did weight watchers, went vegetarian, ditched alcohol, went pescatarian, reduced carb intake, saw a nutritionist, saw my Dr. etc.  I increased exersize as well, I am not a couch potato, am an active person although do have a sedentary job.  I literally cannot lose weight - and people look at me like I am crazy or not 'doing it' right which is just not the case.  Besides, with as much that comes out of me, I should be a stick figure.  But, I don't lose anything.  I actually gained 5lbs when I started to exersize.  I also have an impossible time processing fiber. 

 

So, the elimination diet - i decided to eliminate gluten first as it was easiest for me to do.  Within a week my heartburn was completely gone and I mostly stopped the multiple runs to the bathroom daily.  I didn't have to take omeprazole any more and I started feeling better.  When I do eat gluten by mistake it takes me 3 days to recover, even just contamination effects me this way.  So, I go see my nurse again - she recommends an allergist.  I go see the allergist who says testing for wheat is useless but I should go see a Gastro-enterologist.  I go see a nurse practitioner in the GI department who orders this giant metabolic blood test and other cultures (c-diff, giardia, etc) all negative or normal.  So she orders an endoscopy.  Keep in mind I have been gluten free since May of this year and now we are like in Oct.  Get the endoscopy scheduled for end of Nov and just went through that and on the paperwork I was sent home with, the GI doctor said that he noticed mild flattening of the duodenal mucosa.  A week later get the biopsy results and they are 'unremarkable' so no diagnosis except I am normal.  The last couple of weeks have been good - knock on wood.  Nothing is totally 'normal' in my gut but I feel like I might be getting a handle on it,  I still don't process fiber properly nor do I lose weight but sometimes I think it might be getting a little better with time.  I called the GI dept and have asked them to mail me the pathology because I don't trust someone just telling me the test results are 'unremarkable' without any data to back it up.  Plus I wonder what the flat mucosa were that he visually saw.

 

i guess my main complaint through all of this is how unresponsive the medical community has been.  I have been through this issue with probably 8 doctors and nurse practitioners and every time they have to ask me what is wrong - they take notes and they put them in the computer and they are all in the same darn hospital - don't they even read?  The dr that did the endoscopy said I could continue taking Prilosec - if he had taken 2 minutes to either talk to me or read my file he would have known that I don't take it anymore because I went gluten free.  Right before the procedure I told him I was worried about Celiac and he said - yeah you should be because your food will cost twice as much.  Now I am annoyed beyond becuase since I have been gluten free for 6 months there is a high probability that it won't show up on testing.  I have reached a point where I don't even care if there is a diagnosis because I am not going to do a challenge - i would die I think.  Since gluten free makes the symptoms stop, and since it is the only 'cure' for celiac - I guess who cares what the 'official' diagnosis is.  Anyone else feel this way? 

 

Sorry this got long lol - my name is Lindsay BTW.  Look forward to being a part of this group :)        

Share this post


Link to post
Share on other sites

(Hugs) Welcome to the board.... I think you'll find more than a few people around here who were given a medical run around- it might even be the majority of of. You can include me too.

It sounds like gluten is your evil. I'm glad you were able to solve that riddle. How do you do with milk? Many of us have issues with lactose until we heal, you might be getting closer to that status after being gluten-free for so long.

I was wondering if you had your thyroid well checked recently? Some of your symptoms fit with thyroiditis too. Have the doctor check TSH (should be near a 1),free T3 and free T4 (should be in the 50-75% range of your lab's normal reference range, and TPO Ab will check for an autoimmune attack. Hashimoto's is closely linked to celiac disease so you might want to check it.

Est wishes. :)

Share this post


Link to post
Share on other sites

Thanks very much for the warm welcome - I should have mentioned that I am hypo-thyroid, have been for many years although have not ever been tested for Hashimoto's.  I will mention that to my endocrinologist for sure.  Thank you!!

Share this post


Link to post
Share on other sites

Well done being your own advocate, it sounds like you found your answer (or at least part of it). You are not alone in your frustration with the medical community (I suggest you check out gluten dude's blog online for others doctor horror stories - so that you know you are not facing this frustration alone).

The good news is, gluten free is working! Given you've gone the medical route thoroughly - I'd suggest you keep doing what you are doing, while researching and interviewing new doctors - there are a few online referral sites for doctors kwoledgeable about celiac and gluten sensitivity (for example Dr Tom O'Bryan has a referral network of docs that go thru his training). I wouldn't obsess about a formal diagnosis and focus on doing gluten free right & finding good sources of information & guidance.

Tons of great advocates who understand your issues and frustration are on Facebook & twitter - and may be a help!

Good Luck!

Ps- my weight issues were similar, I barely ate but was gaining & gaining - it wasn't fat, it was "bloat" - lots of it - lost it all gluten free (even dropped a shoe size, apparently my feet had been swelling rather than growing over the years)

Share this post


Link to post
Share on other sites

hello & welcome.

yep, many people  have been  where  you  have been & are at the present  time....you know  your body better than  anyone so  your gut instinct  is  your  best  guide....And  you are correct  it  would be a  waste of time & money  to  do  more  testing  if  you have been gluten-free...

I too,  suggest  getting  a  thyroid  panel  done most  docs  will only  do the TSH  but  scream for  total T-3, FT-3, FT4, total T-3.....also a glucose   & an A1C... ANother  would be  to  check  your  vitamin  & mineral  levels.... Iron,  B-12

D-3 , Ferritin,  potassium, calcium & so on.....

Read  up on  fodmap too,  it  will give  you insight on  other foods  that  can play havoc with our intestinal tract.....

I  also would  start  probiotics  & digestive  enzymes.....limit  dairy for  awhile......

Share this post


Link to post
Share on other sites

This is great information and support - thank you so much!  I truly appreciate it.  Not like friends and family aren't supportive - I am lucky that way, but honestly it isn't like talking with people that actually understand the issues you have - it is so hard to explain to someone who has not experienced it.  Thanks again :)

Share this post


Link to post
Share on other sites

My experience is similar but I am hypo-thyroid.  It has never been easy for me to lose weight, but I have never had a period of time where I have been unable to lose weight prior to about 2-3 years ago.  I have gained 45 lbs in the last 6 years and I cannot lose it.  Dr.'s and others look at me like I am stupid.  I have done weight watchers, ditched alcohol, went vegetarian, pescatarian, increased exersize, tried smoothies for meal replacement, saw a nutritionist - I have done everything.  I started walking again this past spring after taking winter off and i GAINED 5 lbs.  Since May I have been gluten free to deal with digestive issues.  I don't have a diagnosis but I know that eating gluten makes me sick - takes me 3 days to recover.  Over the last two years I have had severe issues with digestion, I do not process fiber properly and the gluten really makes me ill.  In all fairness, I gave up even trying to lose weight when I went gluten free 6 months ago.  I have been trying so hard and nothing works - talk about depressing.  There is nothing worse for my own mental health so I just stopped trying.  I have not lost but I also have not gained since going gluten-free.  Not sure that is significant or not but the digestive issues are about 75% gone at this point so I am hoping I can start to try again soon and it works.  I - like you - have this feeling that my body thinks I am trying to starve it and puts away as much fat as it can to compensate.  This doesn't really help you, however my feeling is that by giving my gut time to heal I somehow have some positive outlook on the prospect of being able to lose wieght in the future.  Good luck! 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   1 Member, 0 Anonymous, 130 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    General Mills Gluten-Free Oats Patent Could Be a Gamer Changer
    Celiac.com 09/25/2018 - In a patent application that could have a huge impact on the gluten-free industry, General Mills, Inc. has described its method and system for removing foreign, gluten-containing grains to establish gluten-free oats. Current FDA guidelines require all products labeled gluten-free to have a maximum gluten content of 20 parts per million (ppm). 
    Published August 23rd, patent application No. US 20180236453 A1 details a method for producing oat grains with gluten levels below 20 ppm and, more preferably, below 10 ppm. 
    Natural oats generally do not contain gluten, but after harvest, transport and storage, large batches of raw oats may contain small amounts of gluten-containing grains, such as wheat, barley, rye and triticale. These can sometimes occur at levels exceeding 20 ppm.
    The General Mills patent application describes a method of arranging mechanical oat sorting operations in series, or in both series and parallel operations. The multi-step process best includes width grading, multiple length grading steps, along with a potential de-bearding step.
    The resulting oats will be gluten-free to under 20 ppm, and possibly to under 10 ppm, and are suitable for the production of  gluten-free oat food products, including cereals and granolas.
    To receive a patent, General Mills will have to prove that their process does what they say it does. A successful patent for General Mills could have a huge effect on the gluten-free oat foods industry. For one, it may allow General Mills to become a major supplier of gluten-free oats for other manufacturers. 
    The benefits of larger scale, more economical gluten-free oat production could include more, and more readily available, gluten-free oat products, along with lower prices for both manufacturers and consumers. Stay tuned for more developments on this and related stories.
    Read more at Justicia.com

    Jefferson Adams
    AN-PEP Successfully Degrades Gluten in Rye Sourdough Products
    Celiac.com 09/24/2018 - A team of researchers recently set out to investigate the degradation of gluten in rye sourdough products by means of a proline-specific peptidase.
    The research team included Theresa Walter, Herbert Wieser, and Peter Koehler, with the Deutsche Forschungsanstalt für Lebensmittelchemie, Leibniz Institut in Freising, Germany.
    Their team monitored gluten content of rye sourdough during fermentation using competitive ELISA based on the R5 antibody. The team noted a decrease in gluten over time, but found that even prolonged fermentation did not bring gluten levels below 20 ppm requirement for gluten-free foods. 
    Interestingly, they did find that Aspergillus niger prolyl endopeptidase (AN-PEP) extensively degraded gluten concentrations of up to 80,000 mg/kg in rye flour, rye sourdough, and sourdough starter under specific temperatures and pH values. Nor did the enzyme inactivate the microorganisms in the sourdough starter. 
    Gluten-free rye flour alone or in combination with sourdough starter was used to produce gluten-free bread, which the team then assessed for its sensory characteristics. 
    Whereas gluten-free sourdough bread lacked any of the favorable qualities of conventional rye bread, the replacement of sourdough by egg proteins yielded gluten-free bread comparable to the conventional rye, and with better qualities than bread made with naturally gluten-free ingredients. 
    This study demonstrates the feasibility of using ANPEP treatment to produce high-quality gluten-free sourdough bread from originally gluten-containing cereals, such as rye. 
    Rye products rendered gluten-free in this manner have the potential to increase the choice of high-quality foods for celiac patients. 
    Source:
    European Food Research and TechnologyMarch 2015, Volume 240, Issue 3, pp 517–524

    Jefferson Adams
    Summertime Peach Caprese Salad (Gluten-Free)
    Celiac.com 09/22/2018 - We’ve done recipes for Caprese salad. We’ve done recipes for peaches. We’ve never done one for peach Caprese salad.
    This gluten-free treat adds fresh peaches for a sweet summery-sweet twist on classic Caprese salad. Easy to make and wonderfully tasty, this recipe is sure to be a hit at your next barbecue or grill session.
    Ingredients:
    1 ripe tomato 1 ripe peach 12-14 leaves of fresh basil 6 oz. ball fresh mozzarella Balsamic vinegar Extra virgin olive oil Directions:
    Slice tomato, peach and mozzarella into ½″ slices.
    Layer the tomato, peach and cheese slices with whole leaves of fresh basil.
    Drizzle with extra virgin olive and balsamic vinegar.
    Season with salt and pepper. 

    Lindsay Cochrane
    Living with Celiac Disease in South Korea
    Celiac.com 09/21/2018 - The English as a Second Language (ESL) pie is so large in countries such as South Korea that there seem to be enough helpings for anyone interested. However, these generous slices may be off limits to individuals with severe food allergies or intolerances, including those with celiac disease. If you have diet restrictions and are thinking of heading to South Korea or another Asian country, the following information will help you decide whether or not this move is a good idea.
    One might think that Asia, the land of rice-based meals, would be a celiac’s paradise. As one naïve dietician told me before I moved to Seoul, “You couldn’t be going to a better place.” This assumption could not be further from the truth. If cooked with traditional ingredients, many local dishes are gluten-free. However, in Korea, wheat flour is now cheaper than other kinds of flour, despite the fact that it has to be imported. Wheat flour and barley are currently the two most common ingredients in Korean food products.
    In Korea, eleven major food allergens must be included on product labels: poultry eggs, milk, buckwheat, peanuts, soybean, wheat, mackerel, crab, pork, peaches, and tomatoes. As for anything else, the Korean Food and Drug Administration states that only the five major ingredients in a product have to be labeled. Furthermore, a label need only include intentional ingredients, not things accidentally mixed into a product through cross-contamination. So you can say goodbye to warnings like: “this product may contain traces of peanuts.” Stricter labeling regulations will be put into effect in September 2006. However, these laws will remain less stringent than those in North America and Europe. According to a source at the KFDA, labeling restrictions are similar in Japan and more lax in China and South East Asia.
    One can easily learn Korean for “I’m allergic to ____” in any phrasebook or from a Korean coworker, friend, or even the guy in the next seat on your Korean Air flight. Yet it is the cultural barrier, not the language barrier, which poses the most difficulties for a celiac.
    Korean culture revolves around the sharing of food due to food shortages during the Japanese occupation; Koreans do not ask, “How are you?” but, “Have you had your meal?” Co-workers, friends, and even the occasional stranger will offer to share food. The politest way to refuse is by saying, “Thank you, but I can’t. I’m allergic.” Also, rather than saying you are allergic to something in Korean—allerugi—it is much more effective to say you cannot have it. (see the list of useful phrases). Unfortunately, even these statements are unlikely to be fully effective when eating Korean food. Many Koreans are completely unaware that frequently-used ingredients such as tashida soup flavouring and soybean powder contain wheat.
    Most Koreans I spoke with were shocked to hear that, as a celiac, I could not eat food which had so much as touched gluten. Generally, they assume that people with food allergies are still able to consume a product with a 1-2% trace of the allergen. Food allergies, celiac disease, vegetarianism, and other kinds of diet restrictions are rare in this country and are not taken very seriously. Furthermore, according to gastroenterologist Dr. Kim of Severance Hospital in Seoul, only two people were ever diagnosed with celiac disease in Korea.
    The world of North American restaurants, where servers cater to those with food allergies, food sensitivities, and plain old picky eaters, is very far away. Koreans generally order what is on the menu without making any special requests. Even Westerners who learn enough of the Korean language to explain their diets often end up being served something they asked specifically not to have. Furthermore, Korean food is not served on personal plates: everyone at the table reaches his or her chopsticks into the various communal dishes, causing cross-contamination.
    I was at a restaurant with some Korean friends and was trying to explain my gluten-intolerance to them, when one young man told me he was so sensitive to peaches that he could not so much as touch a peach without breaking out into a rash. Five minutes later I saw him eat a dish containing peach slices. This is the attitude of Koreans to food allergies—both theirs and yours.
    The gluten-free meal which is safest and easiest to find in Korea is samgyupsal. This dish features fatty, thick slices of pork cooked over a clean grill right at your table. Just make sure that all sauces are kept off the grill. Bibimbop is a rice, vegetable, and egg dish usually served with kochujang, a red pepper paste which unfortunately contains wheat. Bibimbop can be ordered, however, with the kochujang on the side.
    Most foreigners are in Korea to work rather than visit, and having an apartment provides the extra advantage of having one’s own cooking space. There are a few of us who have managed the gluten-free diet in Korea. However, it has not been easy. If you have celiac disease or food allergies and are thinking of moving to this part of the world, I can guarantee you that it will be a monumental challenge.
    Useful Korean phrases:
    Thank you, but I can’t. I’m allergic: kamsa hamnida man, allerugi issoyo. I cannot have barley, rye, or wheat: chonun pori hago homil hago mil motmuhgeyo. Barley: pori Wheat: mil Rye: homil Bibimbop with the red pepper paste on the side: bibimbop kochujang garu Grilled Pork: samgyupsal

    Jefferson Adams
    What’s the Deal with Gluten Sniffing Dogs?
    Celiac.com 09/20/2018 - Some people with celiac disease experience extreme symptoms when they eat gluten. These folks adopt various strategies for navigating the world. One of those strategies involves getting a gluten-sniffing service dog.
    We’ve done a few stories on gluten-sniffing dogs over the years. Dogs like Zeus and Hawkeye are famous for helping their owners sniff out gluten before they can eat it.
    Can Gluten-Sniffing Dogs Help People with Celiac Disease?  The stories are always popular. People love the stories, and people love the dogs. After all, pretty much anyone with celiac disease who has ever read about gluten-sniffing dogs would love to have one. Who could say no to a warm, fuzzy dog that can take a sniff of your food and signal you when it contains gluten?
    The stories almost always generate plenty of feedback and more than a few questions. To answer some of those questions, we’ve decided to do an article that provides some facts about gluten-sniffing dogs.
    Here are a few factors to keep in mind about gluten-sniffing service dogs:
    Gluten-free Dog Status:
    One thing to remember is that proper gluten-sniffing dogs are professionally trained service animals, much like seeing-eye dogs or hearing-ear dogs. 
    As professional service animals, the dogs must be trained and certified as service animals. The dogs may then accompany their master pretty much anywhere they go, and are available to assess all food and snacks.
    Gluten-free Dog Training:
    Proper training takes time, which equals money. Professional trainers might only train one or two dogs, and the training can take about a year. There are very few trainers for gluten-sniffing dogs, and there are also currently no official guidelines or certification.
    Gluten-free Dog Cost:
    In our recent story on the gluten-sniffing black Lab, Hawkeye, we noted that the dog cost $16,000, not including food, and vet bills. 
    Gluten-free Dog Reliability:
    Nimasensor.com notes that “[g]luten-sniffing dogs may detect gluten in amounts as small as .0025 parts per million with 95 percent to 98 percent accuracy.”
    The Mercola.com website says that Willow, a gluten-sniffing German shorthaired pointer in Michigan, can detect gluten with 95 percent to 98 percent accuracy. 
    Read more on gluten-sniffing dogs:
    Gluten-Sniffing Dogs Are Game Changers for People With Celiac Disease Gluten-sniffing dogs help people with celiac disease What to Know About Gluten-Sniffing Dogs Gluten-Sniffing Assistance Dog Helps Celiac Sufferer Lead Normal Life

×