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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,984
    • Most Online (within 30 mins)
      7,748

    Tonyah G
    Newest Member
    Tonyah G
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.
    • Maura Gissen
      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
×
×
  • Create New...