Help Needed With New Diagnosis And Further Testing

[MargoS]

I apologize if this is a redundant question but this is all new to me and I need the forum's advice. I can further explain if anyone is interested or if it helps with your advice to explain how my symptoms began. Let's just say my nutritionist says that I "don't meet the profile of a typical person with Celiac" (he thinks I definitely have a gluten sensitivity and STOP eating all gluten); however my primary care doctor wrote "probable Celiac Disease" as my diagnosis and is sending me to a digestive disease clinic. My symptoms started abruptly, out of nowhere New Years Eve after making and eating homemade seiten (wheat meat) with severe stomach pains, diarrhea, violent vomiting for about 4 hours, and then it was over. I went to the doctor suspecting such a reaction may be an allergic reaction to wheat (not thinking Celiac was even possible.) She ran the blood panel and this was the result:

TTG Antibody IGA: >100 U/ml (Reference: >5 U/ml=Positive)

Gliadin Antibody (IGG): >31 U/ml (Reference: >17 U/ml=Positive)

Gliadin Antibody (IGA): >100 U/ml (Reference: >17 U/ml=Positive)

Endomysial AB(IGA) Screen: Positive

Endomysial AB Titer: 1:320 (Reference: >1:5=Positive)

Allergy testing to wheat/milk/etc= all negative

low calcium, B-12, normal iron

These numbers seem off the charts high compared to the normal reference levels. I have read that many people with Celiac don't show positive blood tests like these. I am wondering why with these numbers my nutritionist thought I may not have Celiac? I read that statistically with these types of numbers, I have like a 97%-100% chance of having Celiac, not just gluten sensitivity. My questions to the experts are, with these kinds of numbers, what do you think the chances that I do NOT have Celiac and something else? Are these off the chart numbers a giant red-flag for Celiac? Isn't this good enough for a diagnosis?

I know that endoscopy is the gold standard for a complete diagnosis of celiac disease- but is it needed if all the numbers to the antibodies are SO high? What else could cause these antibodies to be so high if it is not Celiac? I fear the endoscopy and do not want to do it. However, if necessary, I will do it- I think its important to know how damaged the villi may be...however, I am certain that gluten is very harmful to me and I will not eat it the rest of my life anyway....Is it going to help to know if villi are flattened and damaged? Do I need to repeat the endoscopy years later to see if there was initial damage, it has improved? Is this the normal course of action for Celiac D?

Interestingly, since I got my "pre-diagnosis" for Celiac, I actually notice the symptoms. I continue to have stomach pains and bouts of being sick, I suspect after getting cross contamination of wheat and me eating things accidentally that do have wheat...) I really do think that Celiac "crept" up on me and hit suddenly -after a bout of food poisoning a few months ago I think triggered it to kick-off...I am just surprised I never had major symptoms before now.

What other tests should I ask my doctor for? Is the genetic test at this point a waste of $? (I suspect my Dad died of undiagnosed Celiac- he had arthritis, gout, gallbladder disease, lupus, and died of lymphoma...) What kind of vitamin panels?

Your advice is GREATLY appreciated. This is totally new to me, I don't know anyone with Celiac, and I so want to stay healthy. I think its critical to get all the right tests done early on. Thank you all so much again.

[MargoS]

I apologize if this is a redundant question but this is all new to me and I need the forum's advice. I can further explain if anyone is interested or if it helps with your advice to explain how my symptoms began. Let's just say my nutritionist says that I don't meet the "profile of a typical person with Celiac", and my primary care doctor said "probable Celiac Disease" and is sending me to a digestive disease clinic. My symptoms started abruptly, out of nowhere New Years Eve after making and eating homemade seiten (wheat meat) followed with sudden, severe stomach pains, diarrea, violent vomiting for about 4 hours, and then it was over (but fealt terrible the next few days). I went to the doctor suspecting such a reaction may be an allergic reaction to wheat (not thinking Celiac was even possible.) She ran the blood panel and this was the result:

TTG Antibody, IGA: 100 U/ml (>8 U/ml= Positive)

Gliadin antibody (IGG: 31 U/ml (>17 U/ml= Positive)

Gliadin Antibody (IGA): 100 U/ml (>17 U/ml= Positive)

Endomysial AB (IGA) Screen: Positive

Endomysial AB Titer: 1:320 (>1:5= Positive)

These results all seem "off the charts" high to me by comparing the normal reference ranges. I am confused because reading the forums many people do not have positive tests for Celiac and yet have it; I don't seem to have many symptoms but it looks to me like- how could I NOT have it? I am afraid to go for the endoscpoy but will do it-I guess its important to know how damaged (if so) my villi are... However with these numbers is the endoscopy necessary? I am never eating gluten again, for life, based on these tests and how I have felt from onset. I have been doing gluten free for about a week- and ironically, since my "pre-dignosis" I am actually feeling symptoms that sound like Celiac, and often I am not feeling better. I think I am getting cross-contamination and not really fully rid of gluten yet. I also wonder if cassien is another problem... (Also- food allergy testing showed all negatives to wheat, milk, everything....)

Calcium and B-12 were tested and low (I haven't seen the numbers yet...I wonder what other vitamins I could be deficient in? I was okay with Iron...)

So experts- what do you think? What tests should I have done from here on? Has anyone heard of Celiac creeping up like this and suddenly presenting so severely? Does anyone think its possible that I do not have Celiac and something else (or just severe sensitivity to Gluten?) I read that if your body makes this antigens to gluten, then that means that this is evidence that you already have Celiac Disease because the antigens are only made after villi are damaged in the inflammatory or auto-immune process?

Do these numbers compare with anyone else's with confirmed Celiac? How long is it going to take before I don't have daily stomach pains?

Your advice is GREATLY appreciated. Thank you all!

[cyberprof]

Margo, welcome.

I think with your blood test that you have a 99.9% chance of having celiac. I have heard that there are other reasons for flat villi (on endoscopy) but the TTG test and other tests are specificially looking for (and in your case -finding) antibodies to the protein found in wheat. In other words, your body wouldn't randomly be spitting out antibodies if it wasn't having an antibody reaction. I'm not a scientist or medical person and there are folks on this board who are much better at that than I am but that is my understanding.

Since you will only be eating wheat for a few more days - and hopefully never the rest of your life - I think you will not regret having an endoscopy. It is good for a "firm" diagnosis and also to determine the extent of the damage. Even if they find no villi destruction, you should still go gluten-free. You could also have an ulcer or something. I was somewhat scared of the endoscopy, but really it is a piece of (gluten-free) cake compared to the other five surgeries that I've had. You should have it soon (within another week) if you're not eating wheat now because the damage will start to heal and the endoscopy will be for nothing.

So yes, off the chart numbers = most likely celiac.

Generally, it takes at least a week to feel better but most of us adults take 6 months or longer to feel much better. This could be for several reasons: Amount of damage is high, wheat hides in a lot of places and it is a steep learning curve to go gluten-free, and other random food sensitivities (e.g. dairy, soy, nightshades) may be lurking and may need to be explored.

I personally felt better within a day or two but then started having pain, so I had lots of expensive tests which probably weren't needed. Pain was probably from cross-contamination or accidents or reactions to dairy. It's a good idea to go dairy free too, at least for 6 months or so.

Eat clean, minimally processed food (white or brown rice, sweet potatoes, zuchini, carrots, chicken, turkey, beef, applesauce) mostly cooked veggies and low spice meats for a few weeks. Cooked veggies and fruits are easier to digest. This is also to minimize contamination issues and to give you time to learn about what things are gluten-free. Don't try the gluten-free baked treats or breads for a while until you start to heal: It also gives taste buds a chance to forget how wheat bread tasted so you can adjust to a new normal: If you try things right away you may not like them if you're still comparing them to the original version.

Good luck!

[mushroom]

While you are still undecided about having the endoscopy you should continue to eat a normal amount of gluten, otherwise healing will begin to take place and might negate the biopsy result. It is entirely up to you whether you choose to have this test or not. Has your doctor actually given you a diagnosis without it? No, with those numbers, it is not just severe sensitivity to gluten. Many people have severe sensitivity to gluten and have normal test results. Those tests are testing for celiac disease and it certainly looks like they found it.

Healing and recovery times are different for everyone. Most people feel noticeably better within three weeks although there is often a withdrawal period where you can actually feel worse for a while and wonder if it is worth it. This is like the withdrawal smokers (and drug addicts) go through only usually not so severe The full healing process could take six months, a year, or more.

When you go gluten free for good you should probably also give up all lactose containing products for several months also as you will have lost the enzyme that digests lactose and will not get it back until your gut starts to heal. Lactose without the ability to digest it can also give you tummy pains and diarrhea.

[cassP]

sorry if my answer is short- not feeling well... too much fructose

anyways- it is my opinion that you FOR SURE have Celiac- those numbers are more than high enough, and they're all positive..

your nutritionist is not a GI, or even a Celiac patient- she did not learn how to read the Celiac panel in school..

question- what made you wanna try Seitan? (or as i like to call it: Satan) ??? that stuff looks so nasty... sorry, just being honest..

hope you understand and get the answers you need, and go gluten free 100% soon...

[MargoS]

Cyberprof,

Thanks so much for the detailed response! This is a great forum and I do feel so welcome. Your advice is VERY much appreciated, especially the comment about lactose. The last couple of days I have been eating some dairy and feeling bad, suspecting a possible connection. Stopped for two days and certainly feel MUCH better. Thanks again so much and I ope at some point I can be helpful and contribute back to the community here. Cheers-

Margo

[MargoS]

Dear Mushroom- thanks so much for your advice. It seems like the lactose is especially a major contributor to my issues- and makes sense. I'll re-post results and follow-up with my doc - this valentines day! Cheers-Margo

[MargoS]

Hi CaspP,

Hope you are feeling better soon....

Well. I've been a vegetarian for 18 years....I loved all the "fake meat" products and ate a lot of them- Tofurkey, veggie burgers, fake sausage, and I loved the "wheat meat" I got at vegetarian oriental restaurants....I wanted to do a "mock" meat holiday dinner and this was the second time I did this dish. I NEVER suspected it could be so damaging. I used 4 cups of vital wheat gluten, kneading the dough, and then boiling it in a veggie stock...it made a mock Beef Bourgegion dish that was quite good....until I got deathly ill. I had no idea....vital wheat gluten is like 99% gluten, so if you have hidden Celiac, what better way to bring it out?

It will be tough for me being a vegetarian- and really shouldn't eat diary either. I will NOT go vegan and plan to make salmon a and healthy fish a big part of my diet-but no chicken or beef for me, and no TVP (textured vegetable protein), veggie burgers, or "meat" replacements.....

Again thanks for your comments- hope you feel better!

[cyberprof]

Hi CaspP,

Hope you are feeling better soon....

Well. I've been a vegetarian for 18 years....I loved all the "fake meat" products and ate a lot of them- Tofurkey, veggie burgers, fake sausage, and I loved the "wheat meat" I got at vegetarian oriental restaurants....I wanted to do a "mock" meat holiday dinner and this was the second time I did this dish. I NEVER suspected it could be so damaging. I used 4 cups of vital wheat gluten, kneading the dough, and then boiling it in a veggie stock...it made a mock Beef Bourgegion dish that was quite good....until I got deathly ill. I had no idea....vital wheat gluten is like 99% gluten, so if you have hidden Celiac, what better way to bring it out?

It will be tough for me being a vegetarian- and really shouldn't eat diary either. I will NOT go vegan and plan to make salmon a and healthy fish a big part of my diet-but no chicken or beef for me, and no TVP (textured vegetable protein), veggie burgers, or "meat" replacements.....

Again thanks for your comments- hope you feel better!

Sorry, I missed the vegetarian part. I recommended this site earlier this week Open Original Shared Link She has a lot of veggie and some vegan recipes and an excellent primer on gluten-free eating. Check it out. I can't recommend a better resource.

[cassP]

Hi CaspP,

Hope you are feeling better soon....

Well. I've been a vegetarian for 18 years....I loved all the "fake meat" products and ate a lot of them- Tofurkey, veggie burgers, fake sausage, and I loved the "wheat meat" I got at vegetarian oriental restaurants....I wanted to do a "mock" meat holiday dinner and this was the second time I did this dish. I NEVER suspected it could be so damaging. I used 4 cups of vital wheat gluten, kneading the dough, and then boiling it in a veggie stock...it made a mock Beef Bourgegion dish that was quite good....until I got deathly ill. I had no idea....vital wheat gluten is like 99% gluten, so if you have hidden Celiac, what better way to bring it out?

It will be tough for me being a vegetarian- and really shouldn't eat diary either. I will NOT go vegan and plan to make salmon a and healthy fish a big part of my diet-but no chicken or beef for me, and no TVP (textured vegetable protein), veggie burgers, or "meat" replacements.....

Again thanks for your comments- hope you feel better!

thankyou, still feel like A$$... i swear fructose hits me harder than lactose

and i agree with other poster-> that Gluten Free Goddess girl- Katrina- she's got YUMMY looking recipes on there!

[MargoS]

Mushroom and cassP- thanks again. The gluten free goddess website is excellent!!!!

CassP- I'm curious- being all new to me, how does fructose effect your gluten sensitivity/celiac disease? The day I first got sick I ate a lot of grapes, then the seiten, and a cheese plate (with some red wine). All those things are now suspect for me - you know how you may have lingering food "suspects" but never really know? I long suspected dairy (and there is good reason to avoid that for at least 6-months), the sulfites in red wine....and maybe fructose? What is your reaction- and is it to processed forms or fresh fruit? I would bet that with the onset of celiac disease, the body is probably hypersensitive to a number of possible things....does anyone know a good book that recommends the MOST safe and easy to digest foods to help minimize any reactions and help the healing process??? Hope you are feeling better today! Thanks again-Margo

[cyberprof]

Mushroom and cassP- thanks again. The gluten free goddess website is excellent!!!!

CassP- I'm curious- being all new to me, how does fructose effect your gluten sensitivity/celiac disease? The day I first got sick I ate a lot of grapes, then the seiten, and a cheese plate (with some red wine). All those things are now suspect for me - you know how you may have lingering food "suspects" but never really know? I long suspected dairy (and there is good reason to avoid that for at least 6-months), the sulfites in red wine....and maybe fructose? What is your reaction- and is it to processed forms or fresh fruit? I would bet that with the onset of celiac disease, the body is probably hypersensitive to a number of possible things....does anyone know a good book that recommends the MOST safe and easy to digest foods to help minimize any reactions and help the healing process??? Hope you are feeling better today! Thanks again-Margo

Actually, it was I that recommended Karina's gluten-free goddess. Glad you liked it.

[cassP]

Mushroom and cassP- thanks again. The gluten free goddess website is excellent!!!!

CassP- I'm curious- being all new to me, how does fructose effect your gluten sensitivity/celiac disease? The day I first got sick I ate a lot of grapes, then the seiten, and a cheese plate (with some red wine). All those things are now suspect for me - you know how you may have lingering food "suspects" but never really know? I long suspected dairy (and there is good reason to avoid that for at least 6-months), the sulfites in red wine....and maybe fructose? What is your reaction- and is it to processed forms or fresh fruit? I would bet that with the onset of celiac disease, the body is probably hypersensitive to a number of possible things....does anyone know a good book that recommends the MOST safe and easy to digest foods to help minimize any reactions and help the healing process??? Hope you are feeling better today! Thanks again-Margo

ok, so 1st- my reaction to fructose is slightly different than to gluten... it's similar to excess lactose- but almost worse- MAJOR bloating- like 4 months pregnant, painful gas (sometimes debhilatating), and bladder inflammation. im hoping its only temporary like lactose intolerance is for some people .. but not sure yet.

so, here is a link to glance over:

Open Original Shared Link

and google and research yourself- "fructose malabsorption" is relatively a new topic- and you'll see varied food lists... its kind of something you have to figure out on your own too-

for example- some of the foods on her list i can eat like avacados... i can also eat moderate amounts of tomatoes or watermelon, and onions... but if i overdo onions & certain other veggies- especially if they've been carmelized- then i end up in trouble.

i can do a little bit of mango... and i can do 1/2 a banana... but i avoid pears & dates & apples like the plague.

it's trial and error really- to see what your body can do- that's why i was in pain last night- i wanna get healthy- so i got my favorite drink at whole foods: banana,mango,pineapple,spinach,spirulina... but i drank more than 1/2 of it- so it pushed me over the edge.

do some research- avoiding fructose doesnt = avoid fruit. some fruits have enough sucrose to balance it out.

ps- keep in mind- you know, we're all different.. like there's tons of members on here who live off of Lara bars-