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

Feel Like I Need Confirmation...

eric4015

By eric4015
in Coping with Celiac Disease

Recommended Posts

eric4015 Newbie
eric4015
Posted

For years, every once in a while I would get the most horrific stomach pains that would last for 5 or 6 hours at night. I could never narrow it down to any specifc foods or drinks, and no doctors (the 2 I went to) were able to figure it out. I had an edoscopy, a stomach sonogram, all sorts of test with no diagnosis. 4 months ago I went to a new doctor and when I told her my symptoms, right away, she had an idea what it was. She took blood and the test came back that I had the "antibodies" for celiac. My numbers for this test should be around 45 and I was at 145. So doc told me to go wheat and gluten free for 3 months to see how I feel. Since then, I've felt great. No stomach pains, heart burn is gone. All seems to be OK. But doc hasn't had me go for any other tests to confirm. She says "we go by how yoou feel. If you feel good, stick with the diet." I do feel good, but should I have any other tests to confirm I have celiac? Should I be doing anything else? I welcome any thoughts or comments...

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

You had the test and it was very highly positive.

You were diagnosed with Celiac.

You have had a very positive reaction to the gluten free diet.

You have your answer...You are Celiac by blood test, Dr.'s opinion, and your body's reactions.

Now you just have to find a way to believe it.

It is hard to accept sometimes but there is no other confirmation to get, unless you want to eat gluten until you damage your intestines enough to have a biopsy that shows Marsh level damage..and that seems completely unreasonable and unnecessary.

Takala Enthusiast
Takala
Posted

This sure beats the possible alternative scenarios of being told it's-

AIYH (all in your head)

Asthma/allergies

arthritis

not arthritis, fibro

Heartburn

MS

brain lesions

Fibro again

Gallbladder

Kidney

cystitis

Bone loss

Fibroids/cysts/endometriosis

Idiopathic (medical term for "unknown cause" actually my favorite, as the doc was cool)

Peripheral neuropathy

nerve damage

tendonitis

AIYH again

people with your coloring are more sensitive (shouldn't people with your medical degrees from a cracker jack box, still be able to look up the incidence of celiac in the Celtic population since you noticed ??? )

lack of exercise/proper lifestyle from moron HMO with famous slogan "thrive"

Take the diagnosis!

Roda Rising Star
Roda
Posted

For years, every once in a while I would get the most horrific stomach pains that would last for 5 or 6 hours at night. I could never narrow it down to any specifc foods or drinks, and no doctors (the 2 I went to) were able to figure it out. I had an edoscopy, a stomach sonogram, all sorts of test with no diagnosis. 4 months ago I went to a new doctor and when I told her my symptoms, right away, she had an idea what it was. She took blood and the test came back that I had the "antibodies" for celiac. My numbers for this test should be around 45 and I was at 145. So doc told me to go wheat and gluten free for 3 months to see how I feel. Since then, I've felt great. No stomach pains, heart burn is gone. All seems to be OK. But doc hasn't had me go for any other tests to confirm. She says "we go by how yoou feel. If you feel good, stick with the diet." I do feel good, but should I have any other tests to confirm I have celiac? Should I be doing anything else? I welcome any thoughts or comments...

Sounds like you have a smart doctor!!

ravenwoodglass Mentor
ravenwoodglass
Posted

You have a great doctor. You have positive blood work so stay strict with the diet and go back for repeat blood work in 6 months or so. Your relief of symptoms and the lowering of antibodies on your recheck will be your confirmation. While false negatives are really common on celiac blood testing false positives are not. Read as much as you can here and ask any questions you need to. You also should tell your immediate family, Mom, Dad, and siblings that they also should be tested.

angel9165 Newbie
angel9165
Posted

I have a sister who after testing negative to the antibodies started a gluten-free diet and feels great. She won't got in for further testing as the way she feels is proof enough. I'm with all the other responses, you are a Celiac and more testing isn't needed. I'm glad you're feeling better. My symptoms were very similar to yours and I spent years w/o a correct diagnosis. It wasn't found until I became anemic so be thankful you found that smart doctor early in the process (2 misdiagnoses isn't bad...I went 25 years and saw countless docs). Seems like things are going very well for you now that you know what not to eat...same here. Good luck with your journey and enjoy all those naturally gluten free foods & drinks out there...time to really start living! B)

eric4015 Newbie
eric4015
Posted
  • Author

Thank you to all who shared your thoughts and advice. I appreciate it.

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

Celiac.com Sponsor (A8-M):


micfunky Newbie
micfunky
Posted

I was suprised to hear that 1 in every 133 people have celiac. Glad you found out what was wrong and feel better. Doctors are dumb, took eight years and half a dozan drs to figure out that I had it!

Archived

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

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


  • Member Statistics

    • Total Members
      128,175
    • Most Online (within 30 mins)
      7,748
    Janice Emmendorfer
    Newest Member
    Janice Emmendorfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing

      By Wheatwacked · Posted

      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      I’m so confused…

      By knitty kitty · Posted

      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
×
×
  • Create New...