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Celiac disease possibly but not tested should i?


Alecias39

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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?

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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:

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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 

 

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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 :)

 

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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.

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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.

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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

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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.

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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.

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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.

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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/

 

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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.

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