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
Ads by Google:
Ads by Google:

(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
Ads by Google:

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

  • Who's Online   22 Members, 1 Anonymous, 487 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 07/18/2018 - Despite many studies on immune development in children, there still isn’t much good data on how a mother’s diet during pregnancy and infancy influences a child’s immune development.  A team of researchers recently set out to assess whether changes in maternal or infant diet might influence the risk of allergies or autoimmune disease.
    The team included Vanessa Garcia-Larsen, Despo Ierodiakonou, Katharine Jarrold, Sergio Cunha,  Jennifer Chivinge, Zoe Robinson, Natalie Geoghegan, Alisha Ruparelia, Pooja Devani, Marialena Trivella, Jo Leonardi-Bee, and Robert J. Boyle.
    They are variously associated with the Department of Undiagnosed Celiac Disease More Common in Women and Girls International Health, Johns Hopkins School of Public Health, Baltimore, Maryland, United States of America; the Respiratory Epidemiology, Occupational Medicine and Public Health, National Heart and Lung Institute, Imperial College London, London, United Kingdom; the Section of Paediatrics, Department of Medicine, Imperial College London, London, United Kingdom; the Centre for Statistics in Medicine, University of Oxford, Oxford, United Kingdom; the Division of Epidemiology and Public Health, University of Nottingham, Nottingham, United Kingdom; the Centre of Evidence Based Dermatology, University of Nottingham, Nottingham, United Kingdom; and Stanford University in the USA.
    Team members searched MEDLINE, Excerpta Medica dataBASE (EMBASE), Web of Science, Central Register of Controlled Trials (CENTRAL), and Literatura Latino Americana em Ciências da Saúde (LILACS) for observational studies conducted between January 1946 and July 2013, and interventional studies conducted through December 2017, that evaluated the relationship between diet during pregnancy, lactation, or the first year of life, and future risk of allergic or autoimmune disease. 
    They then selected studies, extracted data, and assessed bias risk. They evaluated data using the Grading of Recommendations Assessment, Development and Evaluation (GRADE). They found 260 original studies, covering 964,143 participants, of milk feeding, including 1 intervention trial of breastfeeding promotion, and 173 original studies, covering 542,672 participants, of other maternal or infant dietary exposures, including 80 trials of 26 maternal, 32 infant, or 22 combined interventions. 
    They found a high bias risk in nearly half of the more than 250 milk feeding studies and in about one-quarter of studies of other dietary exposures. Evidence from 19 intervention trials suggests that oral supplementation with probiotics during late pregnancy and lactation may reduce risk of eczema. 44 cases per 1,000; 95% CI 20–64), and 6 trials, suggest that fish oil supplementation during pregnancy and lactation may reduce risk of allergic sensitization to egg. GRADE certainty of these findings was moderate. 
    The team found less evidence, and low GRADE certainty, for claims that breastfeeding reduces eczema risk during infancy, that longer exclusive breastfeeding is associated with reduced type 1 diabetes mellitus, and that probiotics reduce risk of infants developing allergies to cow’s milk. 
    They found no evidence that dietary exposure to other factors, including prebiotic supplements, maternal allergenic food avoidance, and vitamin, mineral, fruit, and vegetable intake, influence risk of allergic or autoimmune disease. 
    Overall, the team’s findings support a connection between the mother’s diet and risk of immune-mediated diseases in the child. Maternal probiotic and fish oil supplementation may reduce risk of eczema and allergic sensitization to food, respectively.
    Stay tuned for more on diet during pregnancy and its role in celiac disease.
    PLoS Med. 2018 Feb; 15(2): e1002507. doi:  10.1371/journal.pmed.1002507

    Jefferson Adams
    Celiac.com 07/17/2018 - What can fat soluble vitamin levels in newly diagnosed children tell us about celiac disease? A team of researchers recently assessed fat soluble vitamin levels in children diagnosed with newly celiac disease to determine whether vitamin levels needed to be assessed routinely in these patients during diagnosis.
    The researchers evaluated the symptoms of celiac patients in a newly diagnosed pediatric group and evaluated their fat soluble vitamin levels and intestinal biopsies, and then compared their vitamin levels with those of a healthy control group.
    The research team included Yavuz Tokgöz, Semiha Terlemez and Aslıhan Karul. They are variously affiliated with the Department of Pediatric Gastroenterology, Hepatology and Nutrition, the Department of Pediatrics, and the Department of Biochemistry at Adnan Menderes University Medical Faculty in Aydın, Turkey.
    The team evaluated 27 female, 25 male celiac patients, and an evenly divided group of 50 healthy control subjects. Patients averaged 9 years, and weighed 16.2 kg. The most common symptom in celiac patients was growth retardation, which was seen in 61.5%, with  abdominal pain next at 51.9%, and diarrhea, seen in 11.5%. Histological examination showed nearly half of the patients at grade Marsh 3B. 
    Vitamin A and vitamin D levels for celiac patients were significantly lower than the control group. Vitamin A and vitamin D deficiencies were significantly more common compared to healthy subjects. Nearly all of the celiac patients showed vitamin D insufficiency, while nearly 62% showed vitamin D deficiency. Nearly 33% of celiac patients showed vitamin A deficiency. 
    The team saw no deficiencies in vitamin E or vitamin K1 among celiac patients. In the healthy control group, vitamin D deficiency was seen in 2 (4%) patients, vitamin D insufficiency was determined in 9 (18%) patients. The team found normal levels of all other vitamins in the healthy group.
    Children with newly diagnosed celiac disease showed significantly reduced levels of vitamin D and A. The team recommends screening of vitamin A and D levels during diagnosis of these patients.
    BMC Pediatrics

    Jefferson Adams
    Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud.
    Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. 
    In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions.
    According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests.
    SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company.
    Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added.
    Stay tuned for more new on how the Theranos fraud story plays out.
    Read more at azcentral.com.

    Jefferson Adams
    Celiac.com 07/14/2018 - If you’re looking for a simple, nutritious and exciting alternative to standard spaghetti and tomato sauce, look no further than this delicious version that blends ripe plum tomatoes, garlic, olive oil, basil, and firm sliced ricotta to deliver a tasty, memorable dish.
    12 ounces gluten-free spaghetti 5 or 6 ripe plum tomatoes ¼ cup extra virgin olive oil 2 cloves garlic, crushed ¾ teaspoons crushed red pepper ¼ cup chopped fresh basil 2 tablespoons chopped fresh parsley Kosher salt and black pepper ⅓ cup pecorino Romano cheese, grated ½ cup firm ricotta, shaved with peeler Directions:
    Finely chop all but one of the tomatoes; transfer to large bowl with olive oil and ¼ teaspoon salt.
    Cook spaghetti until al dente or desired firmness, and drain, reserving ¼ cup cooking water. 
    Meanwhile, chop remaining tomato, and place in food processor along with garlic, red pepper, and ½ teaspoon salt; puree until smooth. 
    Gently stir mixture into the bowl of chopped tomatoes.
    Add cooked spaghetti, basil and parsley to a large bowl.
    Toss in tomato mixture, adding some reserved pasta water, if needed. 
    Spoon pasta into bowls and top with Romano cheese, as desired.

    Jean Duane
    Celiac.com 07/13/2018 - I went to a friend’s home for dinner.  A few days before, she called and asked me what I could eat.  I asked her what she was planning to make, and she said she was grilling meats with side dishes.  I said, “Great.  Please just grill a piece of chicken for me with salt and pepper, and I’ll be happy to bring a side.” She said, “No need to bring a side.  I’ve got this.” When I arrived, she greeted me and said, “I spent all day cooking tonight’s dinner so you can eat it. Hey would you just check this salad dressing to see if it is OK for you?” I looked at the ingredients and it contained gluten and dairy, both of which I cannot eat.  Then I glanced around the kitchen and saw evidence of wheat cross-contamination, including buns being toasted on the grill, and gluten-containing barbeque sauce spilling on the grill where my “clean” chicken was cooking. She had other guests to tend to, and I couldn’t offer instruction or read the ingredients of everything she used in the meal. 
    At social gatherings, I’ve been challenged too by those who ask if I am really “allergic,” or just eating gluten free as a “fad.” I’ve been told many times by hosts and hostesses that, “a little won’t hurt you,” or “everything in moderation,” or “if it is made with loving hands, it is good for you to eat.”  Of course, all of this is bunk for those with food allergies or celiac disease.  A little bit may kill us, and whether made with loving hands or not, it will certainly make us sick. 
    Those of us with food allergies and/or celiac disease walk a tightrope with friends and relatives. The old rules of etiquette just don’t work anymore.  We don’t want to insult anybody, we don’t want to be isolated, and we also don’t want to risk our health by eating foods that may contain ingredients we cannot tolerate.  So what do we do? 
    Etiquette books advise us to eat what is put in front of us when we are guests in someone’s home. They caution us at all costs not to insult our hostess. Rather, we are instructed to compliment the hostess on her good cooking, flavor combinations, and food choices.  But when foods are prepared in a cross-contaminated environment with ingredients we are allergic to, we cannot follow the old social constructs that do not serve us.  We need to work together to rewrite the rules, so that we can be included in social gatherings without fear of cross-contamination, and without offending anyone.
    Let’s figure out how to surmount these social situations together.  
    Each edition of this column will present a scenario, and together, we’ll determine appropriate, polite, and most importantly, safe ways to navigate this tricky gluten-free/food allergies lifestyle in a graceful way.  If someone disagrees with our new behavior patterns, we can refer them to this column and say, “Here are the new rules for those of us with food allergies or celiac disease.”  When we are guests in someone’s home, we can give them links to this column so they understand the plight we are faced with, bite after bite. Perhaps this will help those of us living with us to understand, be more compassionate, and accepting of our adaptations to keep ourselves safe. 
    This column will present a scenario such as the one above, and ask that you comment on how you would navigate it. Let’s talk about it. Let’s share ideas.  Using the example above, here’s the scenario for this issue:
    What would you do?
    Your kind-hearted friend invites you to dinner and insists on cooking for you.  You arrive and the first thing she says is, “I’ve spent all day making this for you. Oh, I bought this salad dressing for you, but you might want to read the ingredients first.”  You do, and it contains malt vinegar.  You look around the kitchen and notice evidence of cross-contamination in the rest of the meal.  What do you do? 
    Please comment below and feel free to share the tricky scenarios that you’ve encountered too.  Let’s discuss how to surmount these social situations.  What would you do?