Like So Many Others...

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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 :)        

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(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. :)

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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!!

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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)

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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......

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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 :)

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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! 

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    Jefferson Adams
    Celiac.com 07/21/2018 - These easy-to-make tortilla wraps make a great addition to your lunchtime menu. Simply grab your favorite gluten-free tortillas, a bit of cream cheese, some charred fresh sweet corn, creamy avocado and ripe summer tomato. Add a bit of sliced roast beef and some mayonnaise and hot sauce, and you’re in business. And it's all ready in about half an hour. If you cook the corn the night before, they can be ready in just a few minutes.
    12 ounces thinly sliced cooked beef, sliced 6 burrito-sized gluten-free tortillas 1 ripe medium avocado, diced 1 large tomato, diced ½ medium red onion, thinly sliced ¼ cup mayonnaise 2 ears sweet corn, husks and silk removed 1 teaspoon olive oil ¾ cup soft cream cheese spread 1-2 teaspoons gluten-free hot sauce of choice Sprouted pea greens, as desired fresh salsa, as desired Directions:
    Heat grill to medium-hot. 
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    In a small dish, blend mayonnaise and hot sauce. Adjust mixture, and add fresh salsa, as desired.
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    Place a bit of grilled corn kernels, avocado, tomato and red onion in a 3-inch strip along one edge of each tortilla. 
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    Christina Kantzavelos
    Celiac.com 07/20/2018 - During my Vipassana retreat, I wasn’t left with much to eat during breakfast, at least in terms of gluten free options. Even with gluten free bread, the toasters weren’t separated to prevent cross contamination. All of my other options were full of sugar (cereals, fruits), which I try to avoid, especially for breakfast. I had to come up with something that did not have sugar, was tasty, salty, and gave me some form of protein. After about four days of mixing and matching, I was finally able to come up with the strangest concoction, that may not look the prettiest, but sure tastes delicious. Actually, if you squint your eyes just enough, it tastes like buttery popcorn. I now can’t stop eating it as a snack at home, and would like to share it with others who are looking for a yummy nutritious snack. 
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    Jefferson Adams
    Celiac.com 07/19/2018 - Maintaining a gluten-free diet can be an on-going challenge, especially when you factor in all the hidden or obscure gluten that can trip you up. In many cases, foods that are naturally gluten-free end up contain added gluten. Sometimes this can slip by us, and that when the suffering begins. To avoid suffering needlessly, be sure to keep a sharp eye on labels, and beware of added or hidden gluten, even in food labeled gluten-free.  Use Celiac.com's SAFE Gluten-Free Food List and UNSAFE Gluten-free Food List as a guide.
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    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.
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    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. 
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    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. 
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    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.
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    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

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    • Please don't let him go completely gluten-free until all celiac testing is done.  The testing consists of blood antibodies and then an endoscopy to check for damage to the small intestine.  If he eats just 1/2 slice of wheat bread  day it should keep the antibodies active enough to show up on the tests.  You should take him to a gastroenterologist for further testing.  In the meantime he may feel better if he stops eating dairy and sugary foods and carbs.
    • Hi Darnock, You may have celiac disease.  If you do, it is important not to go completely gluten-free until all the celiac testing is done.  The celiac testing measures antibodies in your blood stream.  So you need to keep eating at least some small amount of gluten so the antibodies measurements are accurate.  Ask for the full celiac disease antibodies test panel.  If one of the antibody tests is positive, the next step is to schedule an endoscopy of the upper small intestine.  They take biopsy samples of the small intestine lining during the endoscopy.  If those biopsies show damage consistent with celiac disease then you should get a diagnosis. For now it may help if you eliminate all dairy from your diet, and also sugar and carby foods.  Pepto Bismol and aspirin can help with pain.  Peppermint Altoids can help get gas out of the stomach which may be causing pain. Welcome to the forum!
    • Hello! I have no idea if canker sores are something that can be hereditary...but at this point anything is possible 😀. I too have gotten them all my life but I mostly attributed that to what I was eating. When I started getting them it was years before I ever knew what celiac was or that I had it. I know that they can be caused by several factors including stress/vitamin deficiencies but when I was little...and even now, I ate a lot of high acidic fruits and veggies as well as a lot spicy foods which are both known to also be a contributing factor. I've only had my celiac diagnosis for a few days and haven't been gluten free long enough to know if celiac was the only cause of my canker sores or it was a combination of the high acidic foods, my vitamin deficiencies and the celiac. I do know that I when I slow down on the high acidic and spicy foods for a while, the sores tend to heal up quickly. 
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