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

Negative Blood Test, Still Might Have Celiac?

xoxobriannamarie

Recommended Posts

xoxobriannamarie Newbie
xoxobriannamarie
Posted

Hi everyone, I'm 14 years old and I have recently had a lot of stomach problems. i have had blood tests done, and an ultra sound to rule out gall bladder problems. My symptoms range from stomach cramping, fatigue, being tired all the time, a little acid reflux (which im supposed to be taking a pill for), and a weird skin rash.

My dad had crohn's disease,is lactose intolerant, and has a lot of stomach problems. I have already tried cutting out products with lactose in them, and it didnt make a difference.

My last blood test came back negative for gluten intolerance. Could i still have celiac? I have been doing TONS of research, and I am really convinced that I have Celiac. Should i try a gluten free diet? Im so sick of feeling like crap all the time. I seriously feel like i'm 40 years old sometimes, not a young teenager. I want my body to be healthy, and I want to FEEL healthy.

thank you for all of your help (:

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Hello, and welcome to the forum.

Actually, there is no blood test for gluten intolerance, per se. The only tests currently available test for celiac disease only, which is a specific form of gluten intolerance. Doctors (and researchers) are now recognizing that gluten intolerance exists outside of celiac disease (called non-celiac gluten intolerance) but to date they have not been able to define it or find a test for it. The best way to find out if you are gluten intolerant is to stop eating it and see if you get better. :)

xoxobriannamarie Newbie
xoxobriannamarie
Posted
  • Author

thank you for your help:) I am definitely going to try a gluten free diet. do you have any tips in terms of making sure I dont accidentally get contaminated with gluten? thank you!

Luddie Newbie
Luddie
Posted

Hello, and welcome to the forum.

Actually, there is no blood test for gluten intolerance, per se. The only tests currently available test for celiac disease only, which is a specific form of gluten intolerance. Doctors (and researchers) are now recognizing that gluten intolerance exists outside of celiac disease (called non-celiac gluten intolerance) but to date they have not been able to define it or find a test for it. The best way to find out if you are gluten intolerant is to stop eating it and see if you get better. :)

True, stopping it would be one way to see, but if you're planning to have any endoscopic testing done you shouldn't stop eating gluten before you have it. I know people (in my own familly) who self-diagnosed (after seeing at least two doctors) and went gluten-free and at least their bathroom symptoms all went away! I myself did not have an endoscopy but relied on my doctors perception (and a positive genetic test) to say I have celiac. It's just so personal! Hang in there. As long as you're really still looking for answers you'll get them. Check out the Specific Carbohydrate Diet and maybe even the GAPS. Every little bit of additional information helps, although trying to shuffle them all together into one deck is challenging at first.

Luddie :)

ravenwoodglass Mentor
ravenwoodglass
Posted

thank you for your help:) I am definitely going to try a gluten free diet. do you have any tips in terms of making sure I dont accidentally get contaminated with gluten? thank you!

Go with as much whole unprocessed food as you can. Meat, fish, chicken, beans, rice, potatos, fruit and veggies are all gluten free in their natural stare. You want to avoid anything that has wheat, rye, barley or oats to avoid gluten. If you live in an area that has a Wegmans they label all their gluten free food with a circle G. Kraft and Unilever brands will clearly label gluten ingredients. You don't want to use the same toaster for gluten free breads as you did for wheat bread. And avoid using scratched cookware that has been used for gluten food as well as cutting boards and wooden utensils. For your gluten free pasta you will need to have a different strainer also.

The diet can be hard to get used to at first and don't be surprised if you get a bit moody when you first start it as some of us do go through withdrawl.

xoxobriannamarie Newbie
xoxobriannamarie
Posted
  • Author

thank you so much for all of your help!

Archived

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

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


  • Member Statistics

    • Total Members
      128,177
    • Most Online (within 30 mins)
      7,748
    LaurenV
    Newest Member
    LaurenV
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • 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...