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Questions for celiacs.

sddave

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sddave Enthusiast
sddave
Posted

I was recently told I have celiac disease but not convinced....yet.   Had biopsy told might have it (by a pathologist) and waiting gluten antibody test results.  And probably getting a second opinion.

But saying I am celiac....I have some questions.

1.  What vitamin supplement at a CVS/Rite Aid/Costco do most recommend...or do most people take CeliAct or Ensure Plus?    Cheaper the better pls.

2.  Since going gluten free I pee a lot!   I'm wonder since I'm not eating wheat cereal or buns/peta bread/etc. that there's no bread to absorb water or coffee and it's passing really fast.   Or my anxiety of being recently diagnosed celiac is causing it.    Is there anything I can take to slow it down?

3.  If recently diagnosed will I know how much damage is done to my villi for future comparison tests?

4.  I'm single and hate cooking so I eat out.  There are places here in SoCA that serve food stating gluten-free but I don't trust them.  What if when I'm eating out, I order gluten free but its not gluten free.   How bad does it worsen my condition if it happens occasionally?  

5.  Does everyone go see a registered dietician?   How much do they cost?

 

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Jmg Mentor
Jmg
Posted

Hi Dave and welcome :)

I tested negative but have big problems with gluten so I'll answer and maybe others will follow suit. 

44 minutes ago, sddave said:

I was recently told I have celiac disease but not convinced....yet.   Had biopsy told might have it (by a pathologist) and waiting gluten antibody test results.  And probably getting a second opinion.

This seems back to front. Most people have the blood test then the endoscopy. So it's unusual to see other way round. If you've only just had the scope the biopsy results may still be to come?

 

44 minutes ago, sddave said:

What vitamin supplement at a CVS/Rite Aid/Costco do most recommend...or do most people take CeliAct or Ensure Plus?    Cheaper the better pls.

I take a B complex which I buy from Costco here in UK. Open Original Shared Link It's gluten free and has made a big difference. I also take a multi vitamin and cod liver oil. I'd suggest vitamin D also but you should be getting all you can handle where you live.

44 minutes ago, sddave said:

Since going gluten free I pee a lot!   I'm wonder since I'm not eating wheat cereal or buns/peta bread/etc. that there's no bread to absorb water or coffee and it's passing really fast.   Or my anxiety of being recently diagnosed celiac is causing it.    Is there anything I can take to slow it down?

Funnily enough I was the exact opposite. I pee far less frequently. This forum is a great resource however, pick a symptom, someone will have had it:

Maybe check urinary infection and did they screen for diabetes?

44 minutes ago, sddave said:

If recently diagnosed will I know how much damage is done to my villi for future comparison tests?

This relates to the biopsies you've just had taken. They examine the villi for damage and can use this as a reference point for your reaction to the diet. It's rated on the Marsh scale:

Open Original Shared Link

 

44 minutes ago, sddave said:

I'm single and hate cooking so I eat out.  There are places here in SoCA that serve food stating gluten-free but I don't trust them.  What if when I'm eating out, I order gluten free but its not gluten free.   How bad does it worsen my condition if it happens occasionally?  

For a diagnosed celiac it's very important you adhere to the diet. There's a study, I can't lay hand on right now, which states that falling off the wagon once a month has a marked impact on morbidity levels. Don't panic, I'm not saying never go out, but if you're eating out you need to research the places, talk to the staff and make sure they know that you're not on a fad diet, Open Original Shared Link

Quote

The data available show that for coeliac patients who have taken a gluten-free diet for five years or more the risk of developing cancer over all sites is not increased when compared with the general population. The risk is increased in those taking a reduced gluten or a normal diet, with an excess of cancer of the mouth, pharinx, oesophagus, and particularly of lymphoma (relative risk: 77.8). The enteropathy-associated T cell lymphoma arising in coeliac patients is likely to be a tumor of mucosal T cells, possibly the intraepithelial T cell component. But strict dietary compliance is to be recommended to avoid also other long-term risks associated with coeliac disease: poor general health, developmental retardation, infertility, malabsorption, bone disease, deterioration of the condition during pregnancy.

Of course you can also learn to cook some basic meals and you also can't go wrong with fresh produce, fix yourself a nice salad, have some fish or meat. Learn which brands are safe and go through your cupboards to eliminate any stray gluten sources, eg soy sauce etc. Try and eat as many whole foods as possible in these next few months as your body will have healing to do. 

44 minutes ago, sddave said:

Does everyone go see a registered dietician?   How much do they cost?

 

Don't know, didn't see one, don't think  you really need to. You may want your vitamin levels checked but your doctor can order that. Learn about the diet here or elsewhere online. 

This thread is a good place to start:

Hope this helps. Remember if you want a second opinion you'll need to be eating gluten for further tests to be accurate. 

I'm guessing you're in San Diego? I used to live in PB. From reading on here I think there are quite a few places you can go to. Although I'd be missing my shrimp tacos and carne asada burritos if I were back there... :(

Best of luck! 

 

GFinDC Veteran
GFinDC
Posted
38 minutes ago, sddave said:

I was recently told I have celiac disease but not convinced....yet.   Had biopsy told might have it (by a pathologist) and waiting gluten antibody test results.  And probably getting a second opinion.

But saying I am celiac....I have some questions.

1.  What vitamin supplement at a CVS/Rite Aid/Costco do most recommend...or do most people take CeliAct or Ensure Plus?    Cheaper the better pls.

I take a variety of supplement brands.  Nature made is pretty good quality and can be found at many grocery stores and drugstores.

2.  Since going gluten free I pee a lot!   I'm wonder since I'm not eating wheat cereal or buns/peta bread/etc. that there's no bread to absorb water or coffee and it's passing really fast.   Or my anxiety of being recently diagnosed celiac is causing it.    Is there anything I can take to slow it down?

No clue on that one, but celiac disease can affect any part of the body, so it could be related.

3.  If recently diagnosed will I know how much damage is done to my villi for future comparison tests?

You would need to get the endoscopy and the biopsy test results to compare.

4.  I'm single and hate cooking so I eat out.  There are places here in SoCA that serve food stating gluten-free but I don't trust them.  What if when I'm eating out, I order gluten free but its not gluten free.   How bad does it worsen my condition if it happens occasionally?  

It can take 3 months or more for the antibody attacks to stop damaging your body.  Learning to cook is a  skill with lifelong benefits.  You really shouldn't eat out for the first 6 months anyway.  Eating out is too risky when you are trying to 100% eliminate any gluten getting in your body.  Any gluten you ingest will extend the healing and recovery time.

5.  Does everyone go see a registered dietician?   How much do they cost?

Nope, they sure don't.  Many dieticians are not much help.  The best dietary advice is to simplify your diet down to whole foods and avoid processed foods.  Eating whole foods doesn't mean buying things from the Whole Foods grocery chain. It means eating foods that are in their natural, whole state, not boxed, processed, and mixed with all kinds of additional food preservative, chemicals and flavor enhancers.  Three ingredients or less in a store bought food is a good goal.

 

 

sddave Enthusiast
sddave
Posted
  • Author

Thanks for everyone's responses.

Hellodee2 Explorer
Hellodee2
Posted

I was diagnosed in 06 and still have stomach gurgling, constpation, right and left rib pain plus other stuff and I wonder if I'll ever be healthy. I never had a dietician but relied on books to inform me. I was just told to start Vit D supplements and I have to take linsess for my IBS-C.  When I'm glutened I vomit unless it's very minor then I get that angular cheillitis on my mouth. I just had an endoscope and I guess my villi are ok. I think the pill cam would be best to determine damage through entire intestine. I have pain when bowel movement's move through me and I get cramps from just about everything even water. I've had multiple opinions because I move a lot and change doctors frequently.

Your GI doc should give you a handout that lists safe foods. I just found out you shouldn't eat 'bleached' anything and you shouldn't use benzoyl peroxide.  It makes my face swell.  I would follow all the Celiac websites and the NIH. Carol Fenster has a lot of good informational cookbooks you could use for home cooking. My advice, learn what has gluten in it (spices,etc) then read everything you buy. When in doubt call the company and ask. Being sick sucks, so be proactive.

sddave Enthusiast
sddave
Posted
  • Author
7 minutes ago, Hellodee2 said:

I was diagnosed in 06 and still have stomach gurgling, constpation, right and left rib pain plus other stuff and I wonder if I'll ever be healthy.

That's interesting.   When I was eating gluten (before being told i maybe celiac last week) those were my symptoms most of the time.   When my stress level was really high I got tingling in legs, leg cramps, brain fog and severe stomach pains.  Couple times I had rashes.

notme Experienced
notme
Posted

peeing alot might be reduction of inflammation.  or, maybe get checked for diabetes, as autoimmune diseases like to hang out together.  please learn to cook.    single guy or not, you are a human.   feed thyself  ;)  plus, a guy who cooks is sexy a.f.  :) 

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