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

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Itsabit's topic in Dermatitis Herpetiformis
      13

      SkinSafe

      Most toothpastes are naturally gluten-free, but this article may be helpful:
    2. Scott Adams
      - Scott Adams replied to Cathijean90's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      I’m terrified it’s too late for me😭

      This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):
    3. Itsabit
      - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      13

      SkinSafe

      Thank you for your response. It has some good information for me to investigate further. In answer to your question about Vit D, yes, and it was normal. I am having the B12 level done today. Additionally, I am going to have a urine to test for iodine, after a correlation with it to dermatitis herpetiformis was mentioned in another post. I had read that in...
    4. cristiana
      - cristiana replied to Sunshine4's topic in Related Issues & Disorders
      5

      Neurologic symptoms - Muscle Twitching and Hand Tremors

      I'd like to second supplementation. Around the time of my diagnosis and for a good while afterwards I had twitching muscles, including my face, as well as pins and needles and numbness. We do have tremors in my family anyway, regardless of being coeliac, so I can't really comment on that. If you can find out where you are with your iron levels and...
    5. knitty kitty
      - knitty kitty replied to Itsabit's topic in Dermatitis Herpetiformis
      13

      SkinSafe

      Hello, @Itsabit, Your journey sounds very similar to mine. I'm very concerned about your diet since you say you don't eat a lot of meat, which is the main source of B vitamins. Nutritional deficiencies go along with Celiac Disease. Blood tests are not accurate measurements of deficiency states. The body robs stored vitamins from organs to circulate...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,337
    • Most Online (within 30 mins)
      7,748
    valerieclaire
    Newest Member
    valerieclaire
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      SkinSafe

      By Scott Adams · Posted

      Most toothpastes are naturally gluten-free, but this article may be helpful:  
    • Scott Adams
      I’m terrified it’s too late for me😭

      By Scott Adams · Posted

      This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Itsabit
      SkinSafe

      By Itsabit · Posted

      Thank you for your response. It has some good information for me to investigate further. In answer to your question about Vit D, yes, and it was normal. I am having the B12 level done today. Additionally, I am going to have a urine to test for iodine, after a correlation with it to dermatitis herpetiformis was mentioned in another post. I had read that in my research as well. I am praying that I don’t have that! The dietary restrictions, esp when combined with eating gluten free are horrendous! Talk about malnutrition! Anyway, one step, one day at a time. I’m trying not to get ahead of myself. Not easy. 
    • cristiana
      Neurologic symptoms - Muscle Twitching and Hand Tremors

      By cristiana · Posted

      I'd like to second supplementation.  Around the time of my diagnosis and for a good while afterwards I had twitching muscles, including my face, as well as pins and needles and numbness.  We do have tremors in my family anyway, regardless of being coeliac, so I can't really comment on that. If you can find out where you are with your iron levels and B12, that's a good start.  I am not sure where you are posting from but in the UK normal lab results for B12 are quite a bit lower than in other countries, so you might find if you are borderline you will get some improvement by continuing to supplement that.   I found taking magnesium also incredibly helpful against facial twitches. I don't know about you, but all these symptoms increased my anxiety levels as I was worried about them.  That only served to make the symptoms worse.  So it might be worth looking into addressing any underlying anxiety issues.   I still notice that if I'm nervous, or worried, my blood sugar levels are down, some of the symptoms comes back temporarily.  It's like there is still a bit of a weakness there.
    • knitty kitty
      SkinSafe

      By knitty kitty · Posted

      Hello, @Itsabit, Your journey sounds very similar to mine.   I'm very concerned about your diet since you say you don't eat a lot of meat, which is the main source of B vitamins.  Nutritional deficiencies go along with Celiac Disease.  Blood tests are not accurate measurements of deficiency states.  The body robs stored vitamins from organs to circulate in the bloodstream to supply the brain and heart.  You can have deficiency symptoms before blood levels change. I have a hypersensitivity to sulfites, so much so that I had to switch my toothpaste to one that doesn't contain Sodium Lauryl Sulfate.  SLS can cause oral irritation as a side effect, too.   My mouth would burn and I avoided certain foods.  Dapsone contains sulfites, as do antibiotics.  Treatment with sulfites can precipitate a Thiamine deficiency disorder because sulfites cut thiamine in two making it useless. https://pubmed.ncbi.nlm.nih.gov/35506963/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10506142/ I have an allergy to nickel, also.  Zinc helps keep other metals in balance in the body.  Zinc is also terribly important to skin health and oral health. https://pubmed.ncbi.nlm.nih.gov/8445075/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11274920/ https://pubmed.ncbi.nlm.nih.gov/1977254/ Thiamine (Vitamin B 1) deficiency disorder symptoms and altered thiamine metabolism can occur after radiation or chemo.   Thiamine and Niacin B 3 are important in nerve conduction.  When I was very malnourished, I had paresthesia that made me feel itchy all over, and made my dermatitis herpetiformis extremely unbearable.  The form of Niacin that causes flushing, Nicotinic Acid (not the same as nicotine in cigarettes) is beneficial because the flushing helps open the small capillaries in the skin which allows the antibodies to be cleared and disposed.  Pellagra can occur in Celiac Disease.   I had it, and my doctor didn't properly diagnose it, either.   I had a rash around my neck, Casal's Necklace, along with a blistering rash on my arms and any skin exposed to the sun.   https://pubmed.ncbi.nlm.nih.gov/8445075/ https://cgp.iiarjournals.org/content/10/4/169 https://pmc.ncbi.nlm.nih.gov/articles/PMC11722086/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6780714/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10229844/ https://pubmed.ncbi.nlm.nih.gov/1977254/ You should be checked for more than just B12 deficiency.  The eight B vitamins work together, and we need more of them when we're trying to heal.  They are water soluble, so the body can easily excrete them if not needed. Have you had your Vitamin D level checked?  Vitamin D regulates the immune system and lowers inflammation.   I hope you can find some benefit from my experiences.  Keep us posted on your progress.   P.S.  When trying not to itch the dermatitis herpetiformis, if you press gently on a large area (press with your whole hand) above the itchy spot, the itchiness goes away.  The bigger area of stimulation drowns out that one jangling dermatitis herpetiformis itchy nerve in the brain. For skin care products, I use tallow balm which is absorbed better into the skin than petroleum products or plant products.  Tallow balm (Vintage Traditions is my favorite) helps my Dermatitis Herpetiformis spots look and feel better quickly.  Tallow soap and olive oil soap is beneficial as well.
×
×
  • Create New...