New To Celiac Questions

[violentlyserene]

I was tested for celiac last week and my results came back yesterday as positive. My pcp has referred me to an gastroenterologist for a biopsy but in the meantime, I

[gailc]

You can google or search this site for infertility issues.

I had a colonoscopy and endoscopy last week. My blood tests were negative, biopsies negative. But I have all the signs, including my lactose intolerance is gone.

You should be asleep for both procedures, mildly put out. I woke up when the tube went down my throat, not even bothersome, but they must have upped the sedative because a half second later it seemed I was waking up and it was over.

I did not feel anything from the 7 or so biopsies.

I had a pre-cancerous polyp removed, it was small so I'm not worried, to be sure I don't also have them in my small intestine they did a one hour barium x-ray series today on the small intestine. That only took about an hour for the stuff to reach the large intestine and only 6 hours for it to come out of me, a great contrast to the 12 days to many weeks before the gluten-free diet.

If they find anything in those xrays they'll maybe do the camera thing.

The diagnosis should put you on a more frequent schedule of testing. That is my concern.

After going on the diet I had strong allergic reactions to wheat and oats, so it is possible to have both I guess. More blood tests in a couple weeks for allergies. It would be nice if it were only allergies, but then why did the lactose intolerance go away along with about 30 other symptoms? I was diagnosed with those allergies 50 years ago but never had allergic symptoms before.

There is no treatment for food allergies I was told, in the past all I had to do is eat wheat often.

As for sticking to the diet it is very easy for me because of my violent reactions and all the pain. I now recognize some subtle changes to my digestion if I have a little gluten and violent allergic and intolerant reactions to larger amounts, not sure of this, it was a shocker to find out I sometimes have reaction and sometimes don't right away.

google food allergy symptoms and you will see just a few, and for celiac about 300, I've never found much information for "gluten intolerant".

I got rid of everything in the house with gluten. That might help you, I was never tempted to go off the diet since day 1, except for medical testing and that only lasted 2 weeks, I just refused to do more harm to my body on purpose. And I had a harder time coping with the pain.

Search your library for celiac and gluten , there are some good books out there.

Think of everything wrong with you and google your symptom and celiac, you will find almost every search will result in a link to this website.

gailc

[beachbirdie]

I was tested for celiac last week and my results came back yesterday as positive. My pcp has referred me to an gastroenterologist for a biopsy but in the meantime, I’m a planner and I’m a bit shocked at this. I’m still researching but I have a few questions about things I can’t seem to clearly find. Forgive the stream of consciousness writing please, it seemed the easiest way to get shut my brain up so i could sleep. Anything you all know about these would be greatly appreciated.

What are the possibilities if the biopsy doesn’t confirm celiac?

Could it be an allergy, intolerance to just wheat or other foods?

Is celiac classified as an allergy? Do any of them mean that I’m not looking at a lifetime of no gluten?

Celiac is not an allergy. It is a "disorder" (I don't really like that word - perhaps it is more a "difference"!) in the way the cells of your intestine handles gluten. In some people, it is handled fine, in others it is not. I won't go into the detailed biology of it, but over time the villi get flattened and can no longer absorb nutrients the body needs. It is not a fast process, not like an acute reaction to an allergen. Open Original Shared Link of how the damage progresses. You can do a Google image search for "celiac villi damage" and find lots more.

I'm not an expert on this, but from all the reading I've been doing lately, it seems that once the "switch" is flipped in the body, the damage is progressive. Meaning, you might not have a positive biopsy now because you are in an early stage, but if you continue eating gluten you will get a positive in the future. You have positive antibodies.

If you have celiac, then every time you consume gluten you are causing damage to your body. Not everyone has immediate reaction to gluten so you might not see or feel the damage going on, but it IS happening. If you are celiac, there is no margin of tolerance.

If indeed you do need to go for "a lifetime of no gluten", the change can be made easier if you just choose to do a whole foods diet. Fresh fruit and vegetables, lean meats, rice and potato.

Welcome to the forum! I love your name!

Best,

beachbirdie

[violentlyserene]

Thank you both. I'm not counting on the biopsy to show anything but celiac but it's good to have more information. I'm slowly adjusting to the idea of changing my diet and feel less and less like I need to know that I can have gluten items if i get desperate. I've found gluten-free recipes for nearly everything I'm most bothered by (except good creamy gravy for biscuits) and between that and a better understanding of the damage caused by gluten, I'm okay with a gluten-free diet.

[shadowicewolf]

you're like me. I had a positive blood test (and genetic test) yet a negative biopsy. I eat gluten and my skin starts burning and i get bad acid reflux and severe constipation not to mention my skin condition goes wako and creats big cyst like sores

Honestly if the biopsy comes back negative do the diet anyway, it may 'cure' you

IMO doctors don't know as much as they think they do. Not all pacients are of the classic case.

[ravenwoodglass]

There is a chance of a false negative on the biopsy for a number of reasons so do the diet even if the biopsy is negative. You do have to be strict. Celiac disease is an autoimmune disease where gluten causes antibodies to form which then attack the body. The antibody reaction can affect pretty much any organ including the brain and the reproductive system. Undiagnosed celiacs do have a higer rate of miscarriages, infertility and early menapause. Once you have been gluten free for a while and have healed those issues do usually resolve though.

Read as much as you can here and don't go gluten free or gluten light until after your biopsy. Then the day that procedure is done you can start the diet. Feel free to ask any questions you need to and I hope your feeling better soon.

[beachbirdie]

Thank you both. I'm not counting on the biopsy to show anything but celiac but it's good to have more information. I'm slowly adjusting to the idea of changing my diet and feel less and less like I need to know that I can have gluten items if i get desperate. I've found gluten-free recipes for nearly everything I'm most bothered by (except good creamy gravy for biscuits) and between that and a better understanding of the damage caused by gluten, I'm okay with a gluten-free diet.

Good creamy gravy is one of my favorite things to eat! If you have a recipe for country gravy, just substitute "glutinous rice flour" (no, it's not got forbidden gluten) also known as "sweet rice flour" for the flour in your regular recipe. If you can't find it anywhere else, look in the Asian section of your market and get "Mochiko". That is the same stuff.

It works up exactly the same. You cook it in fat, as in making a roux, but it wont' brown like wheat flour. Then add your liquid and seasoning, voila! Perfect gravy! I experimented on my husband and he didn't even notice any difference. Of course, maybe that says more about his taste than about the gravy

That, of course, is dependent on not needing to avoid dairy! I'm sure there is a decent non-dairy liquid you could sub, I haven't looked so I don't know.

[violentlyserene]

Good creamy gravy is one of my favorite things to eat! If you have a recipe for country gravy, just substitute "glutinous rice flour" (no, it's not got forbidden gluten) also known as "sweet rice flour" for the flour in your regular recipe. If you can't find it anywhere else, look in the Asian section of your market and get "Mochiko". That is the same stuff.

It works up exactly the same. You cook it in fat, as in making a roux, but it wont' brown like wheat flour. Then add your liquid and seasoning, voila! Perfect gravy! I experimented on my husband and he didn't even notice any difference. Of course, maybe that says more about his taste than about the gravy

That, of course, is dependent on not needing to avoid dairy! I'm sure there is a decent non-dairy liquid you could sub, I haven't looked so I don't know.

I'm mildly intolerant to dairy right now but not nearly enough to care. Thank you so much for this. Having this will really make a difference.

[cyberprof]

I'm mildly intolerant to dairy right now but not nearly enough to care. Thank you so much for this. Having this will really make a difference.

No one can tell with my gravy either. I use either sweet rice flour (sold in the asian isle with soy sauces) or corn starch. With Rice flour I use the same amount that it calls for for wheat flour. Cornstarch you use less of, like 1 tablespoon instead of 3 tablespoons.

The only difference with cornstarch is that you can't mix it with hot things, so you mix it with cold water first and then add that to the butter. Most of the time i use a combo.

[Hawthorn]

I'm mildly intolerant to dairy right now but not nearly enough to care. Thank you so much for this. Having this will really make a difference.

you might notice that the intolerance to dairy gets more severe when you go gluten-free (or the symptoms get more troublesome). I didn't even know I had a problem with that until I had gotten the gluten out of my system and most symptoms cleared up. I think it was masked by all of the gluten problems.

I seem ok with lactose free stuff atm so that may be something to look out for for yourself if things get tricky. good luck

[violentlyserene]

After 3 days of a constant upset stomach and two of a migraine and knowing the last time I feel bad like this, it went on for almost a month, I'm starting to reconsider getting the biopsy at all. It'll be probably almost two months (one until the consultation and another based of a guesstimate of the waiting time for appts) and that's a long time to feel like hell and still have to eat the toxic food that makes me feel like that. Is there any room for going gluten free or lite to hopefully reduce symptoms but not invalidate the test? I had a high ttg so there would seem to be a little room right?

My apologies for sounding so pathetically desperate but I kind of am. Nothing about me or my life right now makes coping with two months of hell in any way easier. Actually with the set up of things now, it actually makes it worse than it would normally be but that's besides the point. I forget what that was actually, I'm just hoping for a miracle here.

[ravenwoodglass]

After 3 days of a constant upset stomach and two of a migraine and knowing the last time I feel bad like this, it went on for almost a month, I'm starting to reconsider getting the biopsy at all. It'll be probably almost two months (one until the consultation and another based of a guesstimate of the waiting time for appts) and that's a long time to feel like hell and still have to eat the toxic food that makes me feel like that. Is there any room for going gluten free or lite to hopefully reduce symptoms but not invalidate the test? I had a high ttg so there would seem to be a little room right?

My apologies for sounding so pathetically desperate but I kind of am. Nothing about me or my life right now makes coping with two months of hell in any way easier. Actually with the set up of things now, it actually makes it worse than it would normally be but that's besides the point. I forget what that was actually, I'm just hoping for a miracle here.

It sounds like your body is giving you a clear answer as to the question of you being able to eat gluten. You do really need to be on a regular gluten diet until the biopsy is done. If you are gluten free or gluten lite your biopsies will be negative. There is also a risk of a false negative on the biopsies even on gluten as the false negative rate is up to 30%.

Have you talked to your doctor about diagnosing you based on the improvement he sees on the diet plus a decrease in your antibody levels? Not that you need your doctors permission to be gluten free.

[violentlyserene]

It's a referral so i haven't spoken with the gi dr yet. I'm feeling better for now so the wait isn't so bad.