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

Is a diagnosis necessary

RobinAnn

Recommended Posts

RobinAnn Rookie
RobinAnn
Posted

Hey everyone... newbie here. I have a few questions but first my history:

Dx with Hashimoto's in 2003. Had SEVERE adverse reaction to T4 no idea why but then switched to T3. But T4 opened a can of worms. Immediately after starting T4 had digestive issues. Aften a few years tried gluten free. No help but stayed on gluten-free diet. 2013 gave in to blt cravings and had wheat sandwiches everyday for a week. Woke up one morning with muscles so swollen or inflammed couldn't  get out of bed. No more gluten. Also had blood in stool. 2014 finally dx with pancreas insuffiency. Digestion improved and blood stopped but at same time also dx with colitis (i strongly doubt this dx and don't  take colitis drugs). A year later added cheese back into my diet. Bleeding came back. No more dairy now, blood gone. Now i might have gastritis and sibo. Endoscopy planned for October. 23andMe testing also shows a single mutation for celiac.

If i just stay Gluten-free Casein-free does it really matter is i get a dx for celiac?

Celiac disease and gluten intolerance... same thing?

Is blood in stool common with celiac disease?

Is colitis often a wrong dx for celiac disease.

Can a biopsy dx celiac when already Gluten-free Casein-free? 

Which end of the small intestines used for biopsy? Meaning, when doc looks at my stomach can he do small intestine biopsy or do i need a colonoscopy instead?

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

Celiac.com Sponsor (A8-M):


tessa25 Rising Star
tessa25
Posted

Get the full celiac blood test.. It includes:

TTG IGA

TTG IGG

DGP IGA

DGP IGG

EMA

IGA

It's just a blood test, no reason not to do it. You have to be eating gluten for 12 weeks for the test to not show a false negative. One slice of bread per day is enough. A positive on any one test is supposed to lead to an endoscopy to confirm celiac. Since you're already getting an endoscopy you're good to go there.

There are several things you could have, digestion-wise, so I'd do the tests.

Celiac requires 100% compliance to the diet, no cheating, so it's good to test for it.

Victoria1234 Experienced
Victoria1234
Posted

A biopsy can diagnose celiac disease while gluten-free if your body hasn't healed yet. Depending on how damaged you were it can take a different amount of time to go back to normal. Most places recommend eating gluten at least 2 weeks before biopsy, and lots of people here had negative results doing so.  I was slightly confused as to how long you have been without gluten?  

squirmingitch Veteran
squirmingitch
Posted

Looks like you've been gluten-free for 3 years now this last time? I wouldn't give a snowballs chance in hell that you will test positive on either blood or endoscopy at this point without doing a full gluten challenge.

RobinAnn Rookie
RobinAnn
Posted
  • Author

The thought of eating gluten makes me nervous. That so does not sound like fun. I guess I'll  just stay in the dark.

What about blood in stools. Is this ever seen with celiac disease.

cyclinglady Grand Master
cyclinglady
Posted

You should find the cause of blood in your stool.  I do not think that blood in the stool is common for most celiacs.  You can have more than one autoimmune issue or cancer going on.    We have several members who have both celiac disease and Ulcerative Colitis or Crohn's. 

Either end of the small intestine can be biopsied for celiac disease.  The most common is obtained through endoscopy.  Since you are getting the endoscopy, you might consider a gluten challenge of eating a slice of bread (or equivalent) for two weeks.  Two weeks is too short of time for antibodies to show up in blood work.  

The gluten free diet can work for celiac disease but no one knows what triggers other autoimmune disorders.  This might not be related to celiac disease.  

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...