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

Celiac disease possibly but not tested should i?


Alecias39

Recommended Posts

Alecias39 Newbie

I'm new here, & think I may have celiac disease. why should I be tested for it and continue eating as normal, feeling like crap and constantly having many symptoms related if I could start a gluten free diet n feel better? It doesn't make sense in order to be diagnosed with it you have to keep gluten in your diet and then have biopsy? My dr doesn't think that's the issue as I'm a type 1 diabetic for 35 yrs with uncontrolled bloodsugars, gastroparesis, anemic, constart diarrhea almost everyday, and am on narcotic pain meds that Dr has decreased for last four months yet still have stomach issues. Why not just start gluten-free diet n see if it helps any?  Any one have advise please?


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
8 hours ago, Alecias39 said:

I'm new here, & think I may have celiac disease. why should I be tested for it and continue eating as normal, feeling like crap and constantly having many symptoms related if I could start a gluten free diet n feel better? It doesn't make sense in order to be diagnosed with it you have to keep gluten in your diet and then have biopsy? My dr doesn't think that's the issue as I'm a type 1 diabetic for 35 yrs with uncontrolled bloodsugars, gastroparesis, anemic, constart diarrhea almost everyday, and am on narcotic pain meds that Dr has decreased for last four months yet still have stomach issues. Why not just start gluten-free diet n see if it helps any?  Any one have advise please?

You should definitely get tested!  Celiac disease is strongly linked to TD1 (about 10% of TD1’s have celiac disease).  In fact most Ped endos are recommended to screen all their TD1 patients.  You must be on a diet full of gluten in order for ANY of the celiac tests to work.  It is just ONE reason to get tested before going gluten free.  Another reason is that if your doctors know you have celiac disease, they will check for other issues like osteoporosis as celiac disease is systemic (lots of collateral damage).  For example, insurance will mostly likely approve a bone scan in a young patient if they have a celiac disease diagnosis.  A diagnosis can help get other family members tested.  Our family doctor and insurance provider  does not hesitate to order celiac tests for my kid (should be done every few years for the rest of her life!) because I have celiac disease.   Finally, a firm diagnosis can help you stay on the gluten free diet.  No eye rolling from family members about your dietary choice.  It is hard to dispute  a lab report.  

Any medical doctor can test you.  Consider a new doctor, because it sounds like your current doctor does not read any medical news often or rarely Googles.  Not a good sign!  

Learn more:

Open Original Shared Link

 

 

Alecias39 Newbie

Thanks but if I start a gluten free diet and all or most of my current symptoms get better or are not as bad as now then id rarhwr continue gluten-free diet n not test for it. Could care less if others don't believe me or it helps keep me on strict gluten-free diet cause being t1d for all my life still doesn't keep me from staying on strict diet / med regimine as it is. But knowing that any or many of my symptoms res love for better will be good enough for my own reasoning to stay gluten-free. Thanks for your advice it is appreciated n helpful for family health screeling. I just don't want to feel so disgusted by my symptoms n running to restroom not to even make it in time, or sleep in different room due to has or burprhat is constant n unbearable 75% percent of my day . Why would anyone want to keep eating gluten if it means feeling sick or worse? Maybe I'm more stubborn than I realize or should be

 Idk but any advise help words of wisdom and support is needed n appreciated, so thank you 

 

Jmg Mentor
58 minutes ago, Alecias39 said:

 

 Idk but any advise help words of wisdom and support is needed n appreciated, so thank you 

 

There's some good advice for newcomers to the diet here:

 

be careful with gluten free processed foods, they tend to be high in sugar! You may also want to consider removing dairy, at least for a time. Oh and keep a food diary to note any changes as you progress on the diet, that can prove really helpful as some change is very gradual.

best of luck and welcome :)

 

Alecias39 Newbie

Thanks I am lactose intolerant so have been keeping lactose out of my diet for most time but if I do eat food or drink I take lactose supplement. I also have chronic anemia n very low blood pressure at times cause me to pass out. I do tend to be very tired and fatigued even if just doing basic necessities like brush my hair or dressing myself. I try to watch what I eat n struggle with my blood sugars as well but I don't want to eat foods with gluten anymore in the case I do have celiac disease n want to feel close to better rather than sick or something related to it. I am stubborn n hard at hearing when told things to do or try , I'm difficult that way but am trying to do things differently n better for my health overall. I'll check out the info n links u mentioned. Have great day.

Wheatwacked Veteran

Wheat free or die;).  The sooner you start the better you feel. All those years going to the doctor and they had no clue. What makes you think they know more than or care more than you? Follow your gut.

tessa25 Rising Star

One way to go gluten free without waiting and still get part of a diagnosis would be to do the  blood test today. You can sign up at an online test site today and have your blood test done today. So here's my spiel (just a customer):

You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). Then if any one test comes up high you can give it to your gastroenterologist so they can do an endoscopy (this would require you to stay on gluten). The blood draw is done at your nearest Labcorp. You get your results in less than a week at walkinlab.com .

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA


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



Celiac.com Sponsor (A8-M):



Sharon Stratechuk Newbie

I'm new to this site. Had one test come back + and just had another one done yesterday. Just wondering are Celiac able to eat bananas.

psawyer Proficient

Bananas are naturally gluten-free. Fruits do not contain gluten, nor do vegetables. Gluten is found in grain, and you won't likely find that in the produce department. Enjoy, and welcome aboard.

GFinDC Veteran
23 minutes ago, Sharon Stratechuk said:

I'm new to this site. Had one test come back + and just had another one done yesterday. Just wondering are Celiac able to eat bananas.

Yes, you can eat bananas but only on Sunday.  :)  Kidding.

Peter has it right.  Most fruits, veggies and meats are naturally gluten-free.  The problem for celiacs are grains including wheat, rye, barley, and oats (only some celiacs react to oats).  Any food though can be contaminated with those grains.  An example could be a bakery that sells fruit.  The flour in the air could land/settle on the fruit.  So a simple solution is to rinse foods before eating them.

Ennis-TX Grand Master
8 hours ago, Sharon Stratechuk said:

I'm new to this site. Had one test come back + and just had another one done yesterday. Just wondering are Celiac able to eat bananas.

As mentioned above is true, I used to love fruit -_- I got other AI diseases and some other issues that prevent me from eating fruit but I am a freak lol. ANYWAY since your new I will link you the newbie 101 threads. I would be more concerned with hidden gluten in your old condiment filled with crumbs, your pasta strainer, cutting boards and and scratched pots in your house then say the banana you got at the store....peeled off the outside that might have been touched or handled by anything else and eaten the safe clean insides lol....banana come with their own wrapper perhaps the safest bet, funny they used to give celiac babies a mostly banana diet before they understood this disease well.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

Wheatwacked Veteran
On ‎1‎/‎17‎/‎2018 at 8:48 PM, GFinDC said:

Just wondering are Celiac able to eat bananas.

Celiac Disease is damage to the nooks and crannies in our intestines leading to malnutrition, vitamin deficiencies with all the various symptoms that make it so hard to diagnose. Then you add years of the antacids, antibiotics, Tylenol, opioids, alcohol, etc., each with their own particular side effects and damage. Now you've got a toxic environment that kills off the beneficial bacteria increasing malnutrition.

Theoretically you can eat anything except gluten. But wheat is so ubiquitous in our diet and economy there are unlimited opportunities for cross contamination. So read the label. Use common sense. If there isn't a label it doesn't have wheat so you can eat. Big Food likes to add wheat to everything because it is addictive and helps them ensure you can't eat just one. Why on earth else would Campbells Tomato Soup have wheat listed as an ingredient? Meantime your body is in distress from malnutrition so you need to be sure to replenish D3, and Iodine for starters and treat and support any other symptoms while you heal. Good nutrition without wheat is the only way to stop progression. And just like chewing paint chips made with lead is bad, so is food with wheat.

 

On ‎1‎/‎18‎/‎2018 at 5:23 AM, Ennis_TX said:

banana come with their own wrapper

well said, doesn't need a label.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Frustrated

    2. - knitty kitty replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      This Roller Coaster Ride Needs to Stop

    3. - Jmartes71 replied to Jmartes71's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Frustrated

    4. - Scott Adams replied to NCalvo822's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Newly Diagnosed

    5. - knitty kitty replied to Jmartes71's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Frustrated


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,459
    • Most Online (within 30 mins)
      7,748

    Mary Stieber
    Newest Member
    Mary Stieber
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      I followed the Autoimmune Protocol Diet to get my symptoms calmed down and my nutrients up.   I know what a struggle it is.  You're why I'm here. Smoothing out some rough parts of your journey makes my journey worthwhile. Here's the tests you can get for Celiac antibodies...  
    • knitty kitty
      @Ginger38, I'm with you!   I could not take Metformin.  I got so sick, constant diarrhea, abdominal cramps, extreme highs and lows, no energy, weight loss, muscle wasting.  Just horrible.   Metformin is known to block thiamine absorption.  Talk to your doctor about thiamine deficiency.  It's called Gastrointestinal Beriberi.  My doctor didn't recognize thiamine deficiency outside of alcoholism.  So I took over the counter Thiamine in the form Tetrahydrofurfuryl Disulfide and felt health improvement within an hour.  Magical!   I followed the Autoimmune Protocol diet to get my stomach calmed down and control my blood glucose levels without medication. Being diabetic, we lose more thiamine through our kidneys, and the Metformin on top of it and malabsorption from Celiac.  Talk to your doctor soon!
    • Jmartes71
      Thankyou I will be seeing my new primary this coming Monday and will ask.I did ask about some other blood test to look for that I saw on this website.I pushed the second ANA panel two months ago thinking it would show but found out it doesn't.I don't have lupus which seems what the ANA panel seems to only look for.I have come to the conclusion that doctors are like hair people meaning all hair places know how to cut hair and style but not all know how to grow hair.I was given tramadel for nearly 20 years to push through. I literally can't no more and stopped taking tramadel since I was swelling slowly in the belly.I will diffently show new primary this website and hopefully he will help.Its so hard because im falling apart with my eye, skin and read every label and stay away from what Im not supposed to.I had SIBO test done and it died on me and didn't complete all 8 breathes just the 5.I spoke to np and was finally validated by word of mouth.Cone to find out I have to repeat again.I went to a reputable hospital to be let down.I have to redo breath test but want to do at hospital instead of at home so no issues.Its not pleasant drinking that glucose stuff and not getting a direct answer. I live in Northern Cali.What recommended gi would know about celiac  disease, really know because I thought I found one but didn't. I don't want to digest any wheat, dairy, peanuts, rye, barely, eggs,garlic, walnuts because I get sick.When i showed the reputable hospital my past food allergies i was told that test is old.My thoughts were i was made in 1971 and its still avtive with diagestive issues. 
    • Scott Adams
      It’s completely understandable to feel blindsided by a celiac disease diagnosis, especially when you’ve never experienced any noticeable symptoms. Many people assume that celiac disease always comes with obvious digestive distress, but in reality, some people—like you—are asymptomatic, or what’s sometimes called “silent celiac.” Even without symptoms, the disease can still cause internal damage to your small intestine and increase your risk for serious complications like osteoporosis, infertility, certain cancers, and neurological issues, including ataxia. That’s why treatment—a strict lifelong gluten-free diet—is recommended for all individuals diagnosed with celiac disease, not just those who feel sick. It’s surprising that your PCP advised you to continue eating gluten, as this contradicts current clinical guidelines. You may want to seek a second opinion from a gastroenterologist or a dietitian who specializes in celiac disease. Even without symptoms, going gluten-free is the best way to protect your long-term health and prevent complications. Your first degree relatives should also be screened for celiac disease. You’re definitely not alone—many in the celiac community have been in your shoes and can offer support as you begin this unexpected journey.  
    • knitty kitty
      Welcome to the forum, @Jmartes71, Wow!  31 years!  That's great! You can get a DNA test to show genes specifically for Celiac.  Your genes don't change whether you eat gluten or not.   Have you been checked for nutritional deficiencies?  The gluten free diet can be low in essential nutrients.  You may have become a bit deficient after such a long time.  Deficiencies in certain vitamins and minerals can lead to many health problems. Start keeping a food journal.  Other food sensitivities could have developed.  Journaling can help connect symptoms with specific foods.  Vitamin D can help calm the immune system so you don't react to everything. When I was deficient, I had peripheral neuropathy, headaches, migraines, joint aches.  I was seriously deficient in many other vitamins and minerals.  Our bodies need the eight essential B vitamins to function properly.  Thiamine deficiency can appear first because thiamine can become depleted within eighteen days. Infections can deplete thiamine stores. Covid Longhaulers are frequently thiamine deficient.  Ask for an Erythrocyte Transketolace Activity test if available.  Blood tests aren't really accurate measures of Thiamine, but if low, you've probably been deficient for a good while. Thiamine and Vitamin D may help with menopause.  I also take Oil of Evening Primrose which helps immensely.   I was deficient in Cobalamine B12, thiamine and the other B vitamins.  B Complex vitamins are important for nerve health.  I had pain up my legs from neuropathy.   A combination of Thiamine, Pyridoxine B 6, and Cobalamine B12 acts as an  analgesic.   Thiamine deficiency can take the form of Gastrointestinal Beriberi, causing almost constant diarrhea.  I bought a chamber pot and kept it handy.  I couldn't make it to the bathroom. Thiamine deficiency can affect appetite.  One can lose their appetite or become ravenous or swing between the two extremes.  Thiamine deficiency can also cause weight loss and muscle wasting.  I lost weight then muscle within days.   Yes, I understand.  I lived through it despite my doctors not recognizing thiamine deficiency outside of alcoholism because it presents differently.  I was so desperate,  I took over the counter Thiamine in the form Thiamine Tetrahydrofurfuryl Disulfide (TTFD) and felt improvement within an hour!  It was like magic!  I also took the other essential vitamins and minerals.  Talk to a dietician. Talk to your doctor about testing for thiamine deficiency.  Definitely.   Keep us posted on your progress!  Best wishes!
×
×
  • Create New...