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

Does This Sound Like Celiac ?

Susan Kelby

Recommended Posts

Susan Kelby Rookie
Susan Kelby
Posted

Hi there. I've been reading the forums all day, and don't want to waste your time with dumb questions, but thought I'd go ahead anyway. I had a heck of an attack this morning, and thought it just might be celiac. I'd appreciate your opinion:

I've had digestive problems for 20 years - typically, a run to the bathroom about 20 minutes after a meal. I had an ulcer when I was 16, but it sort of went away. I've also had a wierd problem for the past 10 years where I feel naseous every morning unless I take motion sickness pills. Oh, and did I mention depression ? Well, anyway, several years ago, I went on the Adkins diet and lost 30 pounds, and also lost all my digestive problems. Note that I was VERY strict, and basically ate no carbs at all - no sugar, no starch. Then a year ago I went on vacation and fell off the wagon and started eating badly again. What started happening was that every so often about an hour after breakfast I would have a terrible attack of stomach pains, sometimes causing me to vomit (sorry to get gross). My doctor suspected gall bladder, however sometimes the attacks would happen after eating dry Cheerios for breakfast, which wouldn't trigger a gall bladder attack, and also didn't explain why the attacks only happen in the morning. I had a gall bladder test which showed my gall bladder wasn't quite functioning correctly, but the surgeon (thank goodness one with brains) didn't think my problems sounded like gall bladder and suggested going low-fat and see what happens. I've been left in a quandry between Adkins and low-fat, which are basically incompatable.

This morning I had the mother of all attacks, after eating lots of breaded chinese food yesterday for lunch and biscuits and gravy last night for dinner, and I started thinking about Celiac, which I'd heard about on People's Pharmacy. I called my doctor to ask to be tested for Celiac, but he won't be in until tomorrow.

So I've spent the day with a very sore tummy, afraid to ever eat anything again, reading this forum. So, do you all think I might have celiac ? The absence of symptoms while I was on Adkins is what really makes me wonder. But then there are lots of times I eat bread or noodles and nothing happens. I just don't know what to think. I'd appreciate any thoughts anyone might have.

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

Celiac.com Sponsor (A8-M):


celiacgirls Apprentice
celiacgirls
Posted

It sounds like it could be celiac or at least gluten intolerance to me. You could have your doctor test you for it, do Enterolab testing, or just try a gluten free diet and see what happens. For some people, it is important to have an official diagnosis. I personally like not having it on my insurance and know I can follow the diet strictly without the official dx. If you are going to do the testing through your doctor, you need to keep eating gluten.

Be aware that the blood test may not indicate a problem when there is one. My daughter was tested several times and was negative. She continued to complain about her tummy and feels better without gluten.

Susan Kelby Rookie
Susan Kelby
Posted
  • Author
It sounds like it could be celiac or at least gluten intolerance to me. You could have your doctor test you for it, do Enterolab testing, or just try a gluten free diet and see what happens. For some people, it is important to have an official diagnosis. I personally like not having it on my insurance and know I can follow the diet strictly without the official dx. If you are going to do the testing through your doctor, you need to keep eating gluten.

Be aware that the blood test may not indicate a problem when there is one. My daughter was tested several times and was negative. She continued to complain about her tummy and feels better without gluten.

thanks for the response. I guess I'm not all that hung up on having an official diagnosis - and I'm not excited about testing. And I don't like the idea of keeping on eating the gluten and risking another hellish day like today !!!!!! The only thing is that if I do end up with celiac, then I'm going to worry about my daughter. She is nine, and her only problem is year-round runny nose allergies, fixed by taking claritin daily. Could that be celiac, or would a wheat allergy be more likely ? I have the same problem; we both went through the horrible skin tests a couple years ago but couldn't find what we were allergic to. I'm sick of being sick !

Susan

LKelly8 Rookie
LKelly8
Posted

Just to make things even more complicated . . . <_<:lol:

Gall bladder disease and celiac often coincide. I was diagnosed a year ago with celiac and now I'm having typical gall bladder attacks. (Nausea after high fat meals, pain/sore spot in the upper right abdomen, etc)

Here's a page from this site on gall bladder and celiac

Lisa Mentor
Lisa
Posted

Susan:

I just wanted to add that good advise was given. So it you choose, to go gluten free without testing, it can be a very complicated issue. Gluten is everywhere. If you do chose to go that route, please check back in with us for the basic start up product brands that will insure that you are totally gluten free.

If you choose to be tested by Endo. lab, or blood test, or endoscopy, you must continue to eat gluten or your result will not be accurate.

Hope you feel better soon.

Lisa

Susan Kelby Rookie
Susan Kelby
Posted
  • Author
Susan:

I just wanted to add that good advise was given. So it you choose, to go gluten free without testing, it can be a very complicated issue. Gluten is everywhere. If you do chose to go that route, please check back in with us for the basic start up product brands that will insure that you are totally gluten free.

If you choose to be tested by Endo. lab, or blood test, or endoscopy, you must continue to eat gluten or your result will not be accurate.

Hope you feel better soon.

Lisa

What I was thinking of doing was to greatly reduce gluten, but still eat a little every day until I have the blood tests or Endo lab test. It doesn't sound like the endoscopy is worth it. It sounds like it only takes an iota of gluten to cause problems, and since it's so hard to completely eliminate it anyway, it would be easy to just cut down until the tests and maybe I wouldn't have a full-blown episode like I had today. And it will give me a chance to eat up some of the last gluten-filled treats I have in the kitchen !

I was out at Odd Lots and happened across Pamela's Chocolate Chip Cookie Mix, and had that for dinner (my stomach still hurts so what the heck I'm going to eat whatever I want). They were really good !

Susan

Lisa Mentor
Lisa
Posted

Susan:

The endoscopy exam is considered the "gold standard" of diognosis. If you choose to get dxd' in that manner...full gluten diet.

If you want to experiment and get totally gluten free, you must be totally gluten free (shampoos, creams, toothpaste, lipstick, ie. anything that can get into your mouth.)

If you suspect that you have Celica, you have two choices:

1. Immediately go gluten free and see if you symptoms will subside. You also need to know that it may take weeks, a month, or many months to feel the healing, depending on the amount of damage to your small intestines.

2. You can continue to eat gluten and make arrangements for testing. I did not go the Engo-lab route, I went for the biopsy which confirmed full flattening of the villi.

Either way, Susan, you can't do it half way. It is either all or nothing.

I hope that this is helpful to you.

Lisa

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

Celiac.com Sponsor (A8-M):


celiacgirls Apprentice
celiacgirls
Posted

If you do decide to do the Enterolab testing, you can stop or cut back on gluten before the test. It will detect gluten intolerance for a while after you stop eating it. For months after, I think, but you would need to check with them to be sure.

My daughter had been gluten lite for at least 6 months and she was still positive. She would eat a cookie sometimes and I didn't worry about cc, but other than that she was gluten-free.

elonwy Enthusiast
elonwy
Posted

As far as your daughters allergies, as a child my main issues were constant runny nose, ear infections every couple months and chronic bronchitis. I was also tiny and skinny. Wasn't until after around 22 that I started getting tummy issues and all the other junk. If you test positive for Celiac, every first degree relative in your family should get tested for it, symptoms or not. I managed to convince my family of that, and we found a whole bunch of celiacs.

Elonwy

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. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      @Sarah Grace, Thank you for the update! It's so good to hear from you! I'm glad Thiamine, B Complex and magnesium have helped you. Yes, it's important to take all three together. I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too. They are high in tyrosine, an amino acid, found also in fermented...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Related issues

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan...
    4. Scott Adams
      - Scott Adams replied to jessicafreya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Tamale ingredients

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    5. Wheatwacked
      - Wheatwacked replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      GI DX celiac despite neg serology and no biopsy

      Just a gluten free diet is not enough. Now you have to identify and replenish your malnutrition. Celiac disease is co-morbid with malabsorption syndrome. Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely. It takes...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748
    Jenny0384
    Newest Member
    Jenny0384
    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

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • 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.