Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Tired Of Being Miserable

ReneCox

Recommended Posts

ReneCox Contributor
ReneCox
Posted

Hi im new here so i dont know if im even posting this in the right section. I am 19 years old and have been having severe gastro problems for two years now. It all started when I decided to start eating really healthy and exercising which made no sense to me. I have never had any other health problems before. Anyways, I started eating ALOT of whole grain products on this new diet and i began to have chronic constipation/diarrhea as well as HORRIBLE bloating and gas. I thought it was just because of hte diet change..but its been two years and the symptoms never went away. I have been to several doctors and had tests on my thyroid, gallbladder, sigmoidoscopys, barium enemas...but i haev never been tested for celiac. I also started having hair loss when i was 17. THe doctors couldn't find anything wrong with me. I have been reading this forum for a while now and i went on a gluten free diet about a month ago...at first i had slight improvement. Then, on thanksgiving, i accidentally ingested gluten from teh self basting turkey unknowingly. That night i became VERY irritable, bloated and TIRED. I fell asleep at 8 which is very unusual for me. The next day and following 6 days i had severe diarrhea as well as joint aches(which i have never had before). Its been about 3 weeks since then and i havent really noticed any improvement in my symptoms(still gluten free) i dont want to get tested becasue i dont want to see a negative result. has anyone ever heard of celiac being triggered by eating alot of whole grains? ive read somewhere before that that can be a trigger. This bloating and gas is ruining my life..i used to be so healthy and happy and now im constantly miserable. please help! sorry this is so long

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GlutenWrangler Contributor
GlutenWrangler
Posted

You are exhibiting classic symptoms of celiac disease. On top of that, you had an awful reaction after being on the diet and accidentally ingesting gluten. I would be very surprised if you didn't have celiac disease, or gluten intolerance, pretty much the same thing. You may test negative if you have a gastroenterologist run the normal tests. If you don't want to risk wasting your time with the normal tests, get tested through Enterolab. If you have celiac disease or gluten intolerance, You will not get a negative results. Enterolab uses fecal testing, which is much more sensitive. Go to www.Enterolab.com and check out the tests that they have available. It is a little expensive, but worth the peace of mind. And if the diet is helping you, stay on it. It won't affect the results. I hope this helps you out. Good luck.

-Brian

GlutenWrangler Contributor
GlutenWrangler
Posted

You are exhibiting classic symptoms of celiac disease. On top of that, you had an awful reaction after being on the diet and accidentally ingesting gluten. I would be very surprised if you didn't have celiac disease, or gluten intolerance, pretty much the same thing. You may test negative if you have a gastroenterologist run the normal tests. If you don't want to risk wasting your time with the normal tests, get tested through Enterolab. If you have celiac disease or gluten intolerance, You will not get a negative results. Enterolab uses fecal testing, which is much more sensitive. Go to www.Enterolab.com and check out the tests that they have available. It is a little expensive, but worth the peace of mind. And if the diet is helping you, stay on it. It won't affect the results. I hope this helps you out. Good luck.

-Brian

Ursa Major Collaborator
Ursa Major
Posted

Brian is right. It is common for people with celiac disease to have a more noticeable reaction to gluten after being gluten-free for a while. I am purposely not saying 'more severe' reaction, because you had one very long, chronic reaction before, and so wouldn't notice the reaction to a single glutening. You were continuously glutening yourself before.

Most people with celiac disease are at least initially intolerant to dairy as well. The tips of the villi produce lactase, the enzyme that allows us to digest dairy. If the villi are blunted (no tips there), you can't digest dairy. And the dairy intolerance may be causing the bloating and diarrhea, as well as constipation, as well as the gluten.

So, I suggest you keep up the gluten-free diet, and eliminate dairy as well.

I hope you feel better soon.

spunky Contributor
spunky
Posted

Hi,

I've never been tested, myself, because I am just so paranoid about doctors at this point.

I just wanted to tell you about what happened to me so you can compare results, and then decide for yourself what you want to do.

First, I was always healthy and decided to go vegetarian to be even healthier, etc. At the age of 40, I went vegetarian, and started having some annoying, but mild gas, bloating, difficulty, etc. By going vegetarain, I had increased whole grains. The gas and other problems (like sometimes I would feel horribly constipated, but on the same days I might have diarrhea too--and always the gas) got worse, so a few years later I turned vegan, because I'd been told by other vegans that dairy products were causing the problems. So, after going vegan, I saw little change, and over the years, those sypmtoms became worse and worse until this time last year, 14 years after first going vegetarian to "improve" my health, I was a total wreck, living in pain and thinking I must be dying. I decided to try going gluten free one other time during all of this, and didn't see improvement...but then, I found out a few years later that I really didn't have the information to go 100% gluten free; I was still eating lots of stuff with hidden amounts of gluten, and every so often I would have some vegan spelt donuts or a vegan pizza (on whole wheat crust), thinking once a month or so couldn't hurt. Ten months ago I decided I'd read more information and had the knowledge I really needed for a proper gluten free trial. So I gave it up entirely, leaving out anything I wasn't absolutely certain about...using gluten free soy sauce, passing up products I couldn't be sure of, staying away from licking envelops or dipping a knife into something with crumbs, etc. Have been totally gluten paranoid for 10 months. I'm now 53, and can compare my health now with that of the past several years, and see I am so much healthier now than I have been for a very long time.

I still avoid meat, but I sure wish I could go back into time and could have known that, apparently (as I said before, I haven't been to any doctors, so this is my own assessment of the situation) whole wheat, spelt, kamut, barley in my vegetarian stews, lots of pastas and pita breads and gluten-based fake meats...all of that really did a number on my health. I did screw up one time when I ate some vegan, "gluten-free" soup at somebody's house. I'm not sure where the problem with the soup was, but something made me sick for 3 1/2 weeks...almost the entire month of Novemember I was just about back like I'd been before going gluten free. So, I guess, as unbelievable as it sounds to me, a little bit of hidden gluten can wreak havoc in a person for weeks.

par18 Apprentice
par18
Posted

Rene,

Are you pretty sure when you went gluten free you were able to successfully eliminate all exposure to gluten? If you had not done this before it might slip in someplace where you would not expect it. I think this may be especially true with women and cosmetics (like I would know). That said you are in a position where a lot of people find themselves. You can attempt to get tested which may or may not reveal anything. You could also start with a very basic gluten free diet sticking to mostly naturally gluten free foods (meats. fruits, veggies) and maybe eliminate dairy in the beginning. If you are sure you have eliminated gluten and start to see a positive result you are on your way to feeling better. If this does happen you have to convince yourself that this is probably going to be your life-style from now on. Trying to do this diet and also finding it convenient is going to be a challange. If you are around gluten (home/school) you will have to be very careful. As others have said you have "classic" Celiac symptoms. Whether or not this is the case mainly rests on expensive testing or a "positive" diet response. With a few exceptions the diet costs you nothing! The diet is the only treatment either way you go. You can start to feel better sooner if you decide to do the diet and respond. You can get almost everything you need in reference to starting the diet from those of us on this board. This includes a "newbie kit". One last thing and that is the more of a gluten free enviroment you can put yourself into in the beginning the easier it will be to sucessfully avoid it and give yourself a true indication of your reaction. Good luck.

Tom

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,877
    • Most Online (within 30 mins)
      7,748
    Sasha bul
    Newest Member
    Sasha bul
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
    • Bebee
      Testing for celiac

      By Bebee · Posted

      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
×
×
  • Create New...