Jump to content
  • 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

Help, Please!


neylonas

Recommended Posts

neylonas Rookie

I am turning to you all for any assistance you can offer. I am a 30 year old female who has been diagnosed with IBS (about 1 year ago). My symptoms include excessive bloating, gas...constipation followed by diarrhea, extreme discomfort, etc. The dr. ordered bloodwork initially and all came back negative for celiac. I have completely cut out dairy and am currently on Amitiza for the IBS, but things are bad. I consume about 4-8 Gas-X pills a day because that is the only thing that makes me feel somewhat better. the doctor has beena bit dismissive when I suggested the posibility of Celiac.... Had an endoscopy and they determined that I have a hiatal hernia...no biopsy was done though...

Here are my questions:

Do these symptoms sound familiar to anyone?

Any suggestions about what to do next?

Books, resources, etc???

Any info would be greatly appreciated. I am so sick of feeling sick!


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



Celiac.com Sponsor (A8-M):



elligal Newbie

Why is Dr. being dismissive? That's not a good quality in a doctor. Sometimes you have to be persistant.

Eriella Explorer

These sound very familiar... Because your blood work came back negative, it means a couple of things: you do not have a problem with gluten, your body doesn't produce antibodies to the gluten, but absolutely can't have it (me); or the test was wrong. The easiest way to find out is to go 100% gluten free for 60+ days to see how you feel. There is no risk of harm going on a gluten free diet without a diagnosis. When I went gluten-free, I felt better after 24 hours and my symptoms started going away after 10 days, but some people get no improvement for a month.

If you do go gluten free, keep a food journal of everything that goes in or on your body so you can tell if you have hidden gluten (shampoo, lotion, pesky food companies that changed their ingredients). If you feel better off of gluten, and have been better for at least a month, you can ask your doctor of a diagnosis of gluten intolerance based off of a positive dietary response. It isn't quite a celiac diagnosis because there is both a non-celiac and celiac form of gluten intolerance, but it is a way to classify yourself and to get a medical note if you need one

As far as books-- I don't have time to read them, but people recommend Dr. Greene's book and Gluten Free for Dummies. As far as resources-- this site has more information than anywhere else. For a basic how to start guide, see Open Original Shared Link

cookie22 Newbie

it sounds to me like you're in the right place. Have you been tested for crohn's and or colitis?

EmmaQ Rookie

Have you ever heard of the Carbohydrate Specific Diet?

I would start there.

The gut needs to be healed to be well.

The Maker's Diet is an interesting read, not sure if I buy it all, but it is good if you have the disipline to give up everything and try dirt to feel well. I think it worked for him, may or may not work for someone else.

ElenaDragon Explorer
I am turning to you all for any assistance you can offer. I am a 30 year old female who has been diagnosed with IBS (about 1 year ago). My symptoms include excessive bloating, gas...constipation followed by diarrhea, extreme discomfort, etc. The dr. ordered bloodwork initially and all came back negative for celiac. I have completely cut out dairy and am currently on Amitiza for the IBS, but things are bad. I consume about 4-8 Gas-X pills a day because that is the only thing that makes me feel somewhat better. the doctor has beena bit dismissive when I suggested the posibility of Celiac.... Had an endoscopy and they determined that I have a hiatal hernia...no biopsy was done though...

Wow, you just described my symptoms almost exactly! I am 28, female, and was diagnosed with IBS last year. I have been following the Eating for IBS diet on Open Original Shared Link, but my symptoms seem to have only been getting worse. I too have horrible bloating and gas. I am constipated during the day, but after the gas gets through, every morning I have diarrhea as soon as I wake up. For the past month or so I have also been having abdominal pain on both sides (more on the left than the right). My doctor gave me Bentyl for the IBS, and my celiac blood panel came back normal. I've tried Gas-X, and it doesn't do much for me, but I have only taken one at a time.

Gluten being the problem for me seems to make sense. I have already cut out dairy and soy, but gluten has been pretty constant in my diet (although not heavy). I am going to call my doctor's office to find out the details of my blood test results (numbers), and I decided to go ahead and try going gluten free for a while to see if I notice a difference. I've tried so many other things that it's worth a shot! Today is my first day, and so far I feel fine. Not much to go on yet though. :)

Mally-bug Apprentice
I am turning to you all for any assistance you can offer. I am a 30 year old female who has been diagnosed with IBS (about 1 year ago). My symptoms include excessive bloating, gas...constipation followed by diarrhea, extreme discomfort, etc. The dr. ordered bloodwork initially and all came back negative for celiac. I have completely cut out dairy and am currently on Amitiza for the IBS, but things are bad. I consume about 4-8 Gas-X pills a day because that is the only thing that makes me feel somewhat better. the doctor has beena bit dismissive when I suggested the posibility of Celiac.... Had an endoscopy and they determined that I have a hiatal hernia...no biopsy was done though...

Here are my questions:

Do these symptoms sound familiar to anyone?

Any suggestions about what to do next?

Books, resources, etc???

Any info would be greatly appreciated. I am so sick of feeling sick!

Have you tried the gluten free diet? That's what we did - without a dx. We are going through enterolab, but have had really great results with the diet. Give it a try - what can you lose but your symptoms? :rolleyes:


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



Celiac.com Sponsor (A8-M):



Mally-bug Apprentice
These sound very familiar... Because your blood work came back negative, it means a couple of things: you do not have a problem with gluten, your body doesn't produce antibodies to the gluten, but absolutely can't have it (me); or the test was wrong. The easiest way to find out is to go 100% gluten free for 60+ days to see how you feel. There is no risk of harm going on a gluten free diet without a diagnosis. When I went gluten-free, I felt better after 24 hours and my symptoms started going away after 10 days, but some people get no improvement for a month.

If you do go gluten free, keep a food journal of everything that goes in or on your body so you can tell if you have hidden gluten (shampoo, lotion, pesky food companies that changed their ingredients). If you feel better off of gluten, and have been better for at least a month, you can ask your doctor of a diagnosis of gluten intolerance based off of a positive dietary response. It isn't quite a celiac diagnosis because there is both a non-celiac and celiac form of gluten intolerance, but it is a way to classify yourself and to get a medical note if you need one

As far as books-- I don't have time to read them, but people recommend Dr. Greene's book and Gluten Free for Dummies. As far as resources-- this site has more information than anywhere else. For a basic how to start guide, see Open Original Shared Link

I am totally new to all of this...have only been on the gluten-free diet for less than a week. So you are saying that there are you can be a non-celiac but still have a gluten intolerance? I am going to try to research it but if you could give me a little insight on that, it would be great. I have also had a very positive dietary response already, but have not had the actual diagnosis yet, so any information you can give is great. thanks...

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,986
    • Most Online (within 30 mins)
      7,748

    Christine1
    Newest Member
    Christine1
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • Create New...

Important Information

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