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

Frustrated And Don't Know What To Do

nikkigal

Recommended Posts

nikkigal Rookie
nikkigal
Posted

Hi all,

I feel like this might be repetitive, so sorry in advance.

I just turned 20 and have had stomach problems for at least 7 years. In the beginning, I had diarrhea and vomiting and constant stomach pain. I ended up getting exploratory surgery and had my appendix removed. Symptoms subsided for a bit, but I still had cramping after most meals and a very sensitive stomach. Within the last 2 years things have gotten much worse. I've had a variety of symptoms and when I came across celiac, I really thought it would explain everything.

A list of symptoms:

1. bloating, gas, abdominal cramping

2. iron deficiency anemia

3. D or loose stools with lots of undigested food and muscus

4. dermagraphism, hives, itchy skin

5. more fatigue than most people my age, at college I actually get a descent amount of sleep but am always exhausted

6. pica- i love flour and uncooked pasta

7. headaches - throbbing pain on one side of my head, about one every 2 weeks

8. There are a lot of stomach related issues in my family, but no one ever feels the need to get tested

I finally convinced my parents to take me to a GI doctor. I got the blood test for celiac, said it was negative. I got a colonoscopy a week ago, negative. Every since the colonoscopy my stomach has been in enormous pain. I got an x-ray today and they discovered there was a pocket of air that was never removed after the procedure. I have a feeling that my doctor tries to see as many patients as possible and I am not treated as an individual. It is much harder when my parents are starting to believe the doctor and the stress is causing my symptoms.

He says it is just IBS and I have a sensitive stomach and a proper diet will help my symptoms. I eat pretty healthy and exercise frequently. I've asked several times to be tested for celiac again or to request more specific testing (since I'm from NY it is illegal to order from entrolab). I don't get why they won't do more testing if I have insurance and I will pay for it. Does this sound like it could be celiac?

I've read a lot about people trying the gluten free diet and it helping. I'm a bit hesitant to start the gluten free diet if there is more testing I can get before I try the diet. I am going to call my primary doctor and see what she recommends.

Any advice is greatly appreciated! :D

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

A colonoscopy isn't for diagnosing Celiac. You need an endoscopy with ,multiple biopsies. celiac is in the upper ( small) intestine. A colonoscopy looks at the lower ( large intestine). Sorry. Yours isn't the only GI who doesn't know what he is doing.

eatmeat4good Enthusiast
eatmeat4good
Posted

Oh wow! Another walking poster child for Celiac/Gluten Intolerance.

And Oh my God...Another ignorant GI who doesn't know endoscopy from colonoscopy.

Try to get the endoscopy. If you can't or if it comes up negative, try the gluten free diet stricly for several months. Gluten Intolerance is every bit as miserable to live with as Celiac...tests or no tests.

Simona19 Collaborator
Simona19
Posted

If you have insurance and you are from New York, then make appointment at Celiac center in Columbia University Hospital in New York. They found many things that I have, or had and they will also test everything what need to be tested. I saw doctor Tennyson, but any doctor would take you.

nikkigal Rookie
nikkigal
Posted
  • Author

If you have insurance and you are from New York, then make appointment at Celiac center in Columbia University Hospital in New York. They found many things that I have, or had and they will also test everything what need to be tested. I saw doctor Tennyson, but any doctor would take you.

even if you don't have a formal diagnosis? i'm going to try the gluten free diet for about 2 weeks and see how i feel. my GI is being somewhat supportive in my experiment.

kareng Grand Master
kareng
Posted

even if you don't have a formal diagnosis? i'm going to try the gluten free diet for about 2 weeks and see how i feel. my GI is being somewhat supportive in my experiment.

Sure. They will see you to diagnosis the Celiac or something else. They won't want you to be off gluten tho.

nikkigal Rookie
nikkigal
Posted
  • Author

Oh wow! Another walking poster child for Celiac/Gluten Intolerance.

And Oh my God...Another ignorant GI who doesn't know endoscopy from colonoscopy.

Try to get the endoscopy. If you can't or if it comes up negative, try the gluten free diet stricly for several months. Gluten Intolerance is every bit as miserable to live with as Celiac...tests or no tests.

is it really worth getting all these tests?

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

It was mentioned but KEEP EATING GLUTEN during testing!

The problem is the symptoms for Celiac and gluten sensitivity are associated with other disorders. Gluten can also be a "trigger" for other disorders or just known to excerbate other illnesses. It would be best to get a proper diagnoses. If you end up being diagnosed with another illness, you can use a gluten free diet to help manage other disorders/diseases. If the diagnoses is Celiac/DH/gluten sensitivity a gluten free diet is your primary treatment, but you may need to supplement vitamins and minerals.

It might be helpful to keep a food journal (even while eating gluten) to pinpoint other food sensitvities.

nikkigal Rookie
nikkigal
Posted
  • Author

It was mentioned but KEEP EATING GLUTEN during testing!

The problem is the symptoms for Celiac and gluten sensitivity are associated with other disorders. Gluten can also be a "trigger" for other disorders or just known to excerbate other illnesses. It would be best to get a proper diagnoses. If you end up being diagnosed with another illness, you can use a gluten free diet to help manage other disorders/diseases. If the diagnoses is Celiac/DH/gluten sensitivity a gluten free diet is your primary treatment, but you may need to supplement vitamins and minerals.

It might be helpful to keep a food journal (even while eating gluten) to pinpoint other food sensitvities.

keeping a journal is a really good idea. I have an appointment at the Celiac center at Columbia, I discussed the options with my parents and they want to make sure it is Celiacs.

Archived

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

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

  • Member Statistics

    • Total Members
      132,921
    • Most Online (within 30 mins)
      7,748
    Rusty49
    Newest Member
    Rusty49
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.