Do I Have It Or Not? Some Say Yes, Some Say No

[TimothyRyan]

so i need some advice on what to do. 6 years ago i was diagnosed with celiac, and went on a gluten free diet...my symptoms went from always, all the time, to on and off for the last like 6 years, before recently i have been having severe reactions/gas/pains/anxiety, all when i know i am gluten free...so i figured i had somethign in addition to celiacs.

so i went to a new doctor 2 weeks ago, got some blood tests and he says, i am negative to celiac, negative to IBD, IBS and Chrons.

now i am super confused. 6 years of being gluten free...and then someone says this!!!!

doesnt being gluten free effect this blood test? is it not harder to determine that i have celiac if i have no gluten in my diet?

my gastroenteroligist seems to want to help, seems to care, but also seems to be convinced that i dont have celiac. i need to get him the records of my former doctors.so he can see what they saw..but also what if they were wrong? he says the tests have gotten better over the years...

either way, i am depressed, stressed, and confused about all this. and i feel like no one cares.

i am getting a colonoscopy next week...and im staying gluten free. until i can trust someone.

any advice will help.

-Tim (la, california)

[gfp]

so i need some advice on what to do. 6 years ago i was diagnosed with celiac, and went on a gluten free diet...my symptoms went from always, all the time, to on and off for the last like 6 years, before recently i have been having severe reactions/gas/pains/anxiety, all when i know i am gluten free...so i figured i had somethign in addition to celiacs.

so i went to a new doctor 2 weeks ago, got some blood tests and he says, i am negative to celiac, negative to IBD, IBS and Chrons.

now i am super confused. 6 years of being gluten free...and then someone says this!!!!

doesnt being gluten free effect this blood test? is it not harder to determine that i have celiac if i have no gluten in my diet?

my gastroenteroligist seems to want to help, seems to care, but also seems to be convinced that i dont have celiac. i need to get him the records of my former doctors.so he can see what they saw..but also what if they were wrong? he says the tests have gotten better over the years...

either way, i am depressed, stressed, and confused about all this. and i feel like no one cares.

i am getting a colonoscopy next week...and im staying gluten free. until i can trust someone.

any advice will help.

-Tim (la, california)

If your Dr. ran tests while you're gluten-free then you need to change doctor.

is it not harder to determine that i have celiac if i have no gluten in my diet?

No it's not harder, it's impossible.

No test exists to test for celiac disease without consuming regular amounts of gluten over an extended period of time.

my gastroenteroligist seems to want to help, seems to care, but also seems to be convinced that i dont have celiac. i need to get him the records of my former doctors

You GI is convinced ... by what if he hasn't SEEN the records ???

Once again.... unless you are eating gluten you cannot be tested.

[darlindeb25]

GFP is correct, the only blood test that can possibly show celiac disease is gene testing, once you have been gluten free. I am not even sure they are accurate. I mean, they definitely tell you which genes you have, but for now, I don't think they have actually determined which genes truly can cause celiac disease.

Maybe you should do some researching and take your doctor the correct information. Some doctors do not like that, but some do.

By the way, if you have been gluten free for 6 yrs and still are having problems, then it's very possible you have other intolerance's too.

[happygirl]

The goal of the gluten free diet is to make your bloodwork and biopsy negative. It means you aren't producing damaging antibodies anymore. Good job!

[veggienft]

Ditto to what Happygirl said. You have celiac disease. When you were eating gluten, you tested positive for the antibodies. Now that you are off of gluten, you no longer have gluten antibodies. People don't stop having celiac disease.

Now you have something else going on.

* Test your reaction to sugar and fruit. The problem would be candida fungal overgrowth. Stop eating them for a couple weeks, and see if your symptoms get better.

* Test your reaction to nuts. The problem with nuts can be their proteins, or seasonal aspergillus fungal toxins.

* Test your reaction to nightshades ......tomatoes, potatoes, peppers and eggplant.

* Test your reaction to beans and soy.

Some of us can't eat ANY of these things.

You can speed up the process by eliminating all these foods for a month. Eat only rice, meat, eggs, green veggies, plain yogurt, and vitamins B and C. See if it improves your symptoms. If so, slowly re-start eating each in turn.

..

[TimothyRyan]

thank you all for the advice, i have decided to change gastroenterologists, and see try and see a celiac specialist here in LA, at UCLA medical center.

although i do have a scheduled colonoscopy with my current GI doc, on monday of next week, i think i will still go through with that....because of the long wait (a little over a month) to see the celiac doctor.

does anyone not advise me to continue with the colonoscopy?

still really confused, but your advice is helping put me on the right track. it is hard to make some of these difficult decisions, and being still somewhat young. (25)

thanks again everyone.

-TIM

[leadmeastray88]

thank you all for the advice, i have decided to change gastroenterologists, and see try and see a celiac specialist here in LA, at UCLA medical center.

although i do have a scheduled colonoscopy with my current GI doc, on monday of next week, i think i will still go through with that....because of the long wait (a little over a month) to see the celiac doctor.

does anyone not advise me to continue with the colonoscopy?

still really confused, but your advice is helping put me on the right track. it is hard to make some of these difficult decisions, and being still somewhat young. (25)

thanks again everyone.

-TIM

Just to be clear - are you getting a colonoscopy to check for things other than Celiac? Because they can't diagnose Celiac through a colonoscopy, only an endoscopy.

You have already been diagnosed Celiac, so there's no second guessing that. If you're concerned that there's something else going on (besides other food intolerances, like veggienft said) then I would go through with it, just to rule out other things. In the meantime, I agree with veggienft that you should explore other intolerances.

[TimothyRyan]

Yes, i had an ER visit 2 weeks ago, and they said the CT scan showed a thickening in the lining of my colon. and it makes some sense because my BM's are more often than not very pencil thin so that is why I still want that done.

Also, it is really hard for me to eat anything the last 2 weeks. I have had a extreme loss of appetite, and when i can eat, i react very strongly with gas, burning, and gargling. I am hardly even eating and i am very weak and fatigued which is probably triggering all the anxiety and nervousness.

doctors take sooo long. and the ER's do almost nothing about GI problems it seems.

[jerseyangel]

Timothy, I think you should go through with the colonoscopy--the thickening of the colon wall could indicate (among other things) colitis/microscopic colitis. My gastro just told me this last week.

[TimothyRyan]

thank you, yes i plan on going through with the colonoscopy as scheduled... Also, I called my doctor today, and he added a endocopy as well.

so weird, that 6 years after being diagnosed with Celiac, i feel like Im back at square one.

the weirdest part though is my lack of appetite, and therefore i am undereating. i feel full all the time. anyone ever felt like this?

also anyone ever been prescibed a medicine called "BellaDonna alkaloids w PB tablets" ? with any success for IBS or any weird pain/bowel moevements?

i love this forum

[Fiddle-Faddle]

Welcome, Timothy!

Your doctor is an idiot.

Of course the blood work would be negative if you've been gluten-free. They test for antibodies to gluten, which is something you don't produce if you're not eating it!!!

There are other food sensitivities you may have developed, such as dairy, soy, etc.

I've noticed that if I don't eat enough fresh fruit and veggies, and if I go too heavy on the gluten-free breads, cakes, and cookies, my digestion is not happy. Not to imply that you have an imperfect diet or anything, but...

There are also a couple of threads on this board that have a lot of info on Lyme Disease (which a truly astonishing number of members here have) and mercury poisoning (also surprisingly common, usually from dental fillings and/or vaccines--if you've been getting the flu shot, you've been getting a yearly dose of mercury with it).

I do hope you find answers soon. You might try keeping a food diary to see if there's any kind of pattern to what sets your digestion off. Or, if you think it's possible that foods you thought were safe might NOT be safe, you might post what you've been eating. For example, I know someone whose nutritionist recently told her that Chinese food, Rice Krispies and Corn Flakes were gluten-free (they are not, as you probably know). And I was surprised to find that my local grocery stopped making their own tuna salad at the deli counter, and used a mix--which contained bread crumbs.

Many of us were SHOCKED to find that Rice Dream Rice Milk--which says "gluten free" on the box--is not gluten-free (it's processed with barley enzymes, which they are not required to list, as long as the gluten in their product is less than 200 ppm, which is easily enough to cause a reaction).

The gene tests aren't a huge help, as in the US,only 2 genes are recognized as associated with celiac, while Europe and Asia recognize 7. Why the US forgot the other 5 is beyond me.

[TimothyRyan]

if by chance, i have been contamintated in the last month or so, and these symptoms were a gluten flare up reaction, is it possible to have such a severe flare up, but also test negative because of lack of gluten?

what worries me most is that i had an ER visit. and of course the crazy anxiety. but also, a new family doctor has just gave me zoloft, and xanax for serious panic attacks....and ive read if it is IBS than the zoloft could help that as well. and xanax.

other symptoms have been lack of appetite, feeling of constant fullness, the burning gut. the weird bowel movements.. the burping from the bottom of my gut...usuals...

the weird and scary ones are the muscle twitches everywhere randomly, and also somewhat constant in my left arm.brain fog, weird sleeping habits...possibly tremors, although im not sure what that means, except it seems to be like forcing my sleeping self to wake up, and its uncomfortable

..oh and the weirdest one, and possibly too much information, is my lack of libido, and loss of sex drive. gladly i have a great understanding and wonderful girlfriend who is very supportive of my condition. and just to reiderate...i am only 25.

anyway, today was a decent day. not too much pain other than in my lower right back...and i managed to eat 2 bowls of chicken potato soup, and 2 yogurts that seemed to cause no symtoms.

its so difficult finding doctors with no family history in the city you live in!!!but yes, thanks for all the advise so far, i plan on taking almost all of it.

[gfp]

if by chance, i have been contamintated in the last month or so, and these symptoms were a gluten flare up reaction, is it possible to have such a severe flare up, but also test negative because of lack of gluten?

Yes because the blood tests are not a binary Yes/No ....

what worries me most is that i had an ER visit. and of course the crazy anxiety. but also, a new family doctor has just gave me zoloft, and xanax for serious panic attacks....and ive read if it is IBS than the zoloft could help that as well. and xanax.

other symptoms have been lack of appetite, feeling of constant fullness, the burning gut. the weird bowel movements.. the burping from the bottom of my gut...usuals...

Putting everything together (and taking into account libido) this sounds like anxiety and depression.

Xanax won't help with the libido though....

HOWEVER: This certainly doesn't rule out GLUTEN as the the culprit.

Depression can be caused by gluten ... anxiety is of course normal when you don't kbnow what the heck is happening and especially when your sleep is disrupted. If the acidity is causing problems getting your breath this can also cause panic attacks....

[taweavmo3]

You just pretty much described all of my symptoms after a glutening! Not to say that is exactly your problem, since everyone is different. But the muscle twitches (especially an annoying eye twitch that I only get when glutened), messed up sleep pattern, loud gut, etc.....sound alot like gluten symptoms to me.

I've had my dd's ttg levels checked not long after two major glutenings at her school, it just happened that we had her checkup at that time. And her ttg still turned out fine, so I don't think you can really rely on the blood tests to tell you much.

I hope you find some answers soon, I'm sure it's incredibly frustrating. Good luck with everything.

[gfpaperdoll]

I would double check your medications & everything that you are eating, sounds like some gluten is slipping in. Also get some blood work done for vitamin & mineral levels. Sounds like you have something not in balance. Start taking B12 regardless of the level that you test - most of us think the standard is too low anyway. take a sublingual for best results... & you might also need vitamin D, a lot of us are low in D...

I think someone did mention to go back to just plain whole foods & cut out the manufactured stuff. All that stuff gives me cross contamination, it is awful, but I just gave it all up & really do not miss it. I know people that can eat the Diamond Nut thins, the Mary's gone Crackers, etc etc. but not me.

I stick to Mission Brand Corn Chips & Mission Brand White Corn Tortillas - no CC there!! (I should be paid for all the business I send their way!!)

[Jaimepsalm63]

I agree with all the above posters. I would add that the fullness sounds like gastroparesis. I'm not an alarmist, but I went through years of them trying to figure it out even after being gluten free.

So, you might want to look into that too. As well as the above advise with cutting out certain foods and adding in vitamins.

My GI doc said that gastroparesis is also an autoimmune disorder that isn't very common, but can happen. When it does happen you don't have to be diabetic, which is what most people automatically ask me when they know about the disorder in the first place. I have what's called idiopathic gastroparesis.

This is tested through a totally different test and won't be able to be seen with a upper or lower GI series. You have to have a special test and become radioactive for a couple of hours.

If it turns out that you do have gastroparesis....hopefully you won't be as bad as some of us who have it. I'm pretty much stuck on liquids only. I'm such a cheap date for my husband...ha ha.

Go through the tests to rule out other things and to see if the sm intestine has repaired itself properly. It could be as simple as gluten is somehow making it's way into your diet, maybe with cross contamination or without your knowledge (like the rice dream nightmare!!).

I'll pray for simple and being solved soon. What a pain in the rear....no pun intended.

[TimothyRyan]

i tend to only shop at whole foods. Lately i cant really even get down any solid foods, and have tried to just eat soup for about the last week. still hard. not vomiting, but i feel like i could. it just seems to sit in my stomache and burn away,build gas, make rediculous belches, and keep me up all night heart pounding.

yesterday all i ate was a yogurt cup, and a bowl of chicken and rice soup. both labeled gluten free from whole foods.

if i cut back to completely non processed, gluten free foods...what kind of suggestions do people have?

Fruits tend to acid and gas me up. as well as i have believed tomatoes to do for quite some time. Its just so hard to determine what's doing it!!!

again, been gluten free for six years, and have had mild cases of being glutened before, nothing ever this bad except pre-diagnosis...that is why im back trying to get every GI test imaginable.

i will post again after i get my endoscopy/colonoscopy results, if there is a possible condition in addition to celiac.

trying my hardest to keep positive. very difficult.

-T

[Jaimepsalm63]

It really sounds like what I went through before my dx of gastroparesis. There was/is a fullness in the stomach, food just sitting there, gas building up, sometimes feeling sick to my stomach/sometimes just feeling miserable, not always vomiting....but wanting to just to get the feeling over with.

Do you have a "heavy" feeling in your stomach too, like there is a rock right there?

Tell your GI about it and ask if it could be this......gastroparesis.

If your GI says you aren't diabetic and therefor won't look into it, get another GI person.

Liquids are easy to digest as well as applesauce, yoghurt, and small amounts of rice type puddings. (But avoid the milk for right now just in case it may be problems with the casein.

Hopefully, like I said, it's something easily dx and taken care of.

[Fiddle-Faddle]

Timothy, I REALLY believe you need to cut out all milk products--maybe not forever, but at least until your intestinal issues are resolved. Contrary to popular belief, cow's milk products are extremely difficult to digest (unless you are a baby cow!), and if you have a gluten-damaged tummy, milk products will prevent it from healing.

The villi in the lower intestines absorb nutrients and also produce lactase--which digests the sugar in milk (lactOSE). The villi of celiacs are damaged or sometimes even GONE until the patient has been gluten-free long enough to heal, and when they are damaged, they don't produce lactase.

Most celiacs are either lactose-intolerant (at least until they've healed from the gluten damage) or even casein-intolerant (which doesn't seem to go away).

[TimothyRyan]

I will look into Gastroparesis. I do have a heavy feeling in my stomache. Already looking into Diabetes as well. As far as cutting out milk/dairy products, i have already started doing that. But honestly I dont even drink milk...but i usually do eat alot of cheese. (not lately due to my lack of appetite and eating ability.)

what exactly is caesin? and how do i cut that out?

today was an "ok" day. other than the weird feeling of going back on zoloft after all these years, and the general fatigue and weakness ive been having for like 2 weeks now, but at least i ate some stuff more today.

a banana, a small turkey sandwich with gluten free bread, and a small bowl of gluten-free chicken and rice soup. hoepfully i will have some dinner too. stomache still burns, gassy and bloated as all hell,lower right back pains coming and going, but the burping has seemed to kind of halt for now. hope i dont speak too soon!

sunday i do the halfLytely Bowel Prep kit for my colonoscopy and endoscopy on Monday. (the thick colon issue!) Im kind of concerned about this "HalfLytely" stuff. i found some info on the pills being gluten free, but not much on the mix solution...any ideas? either way it'll be a rough weekend.

hope i get some answers on monday. gonna ask them to take some biopsy's of my intestines also, just so i have them. also going to get all my medical records since first diagnosis transfered to the UCLA celiac specialist i have my first appointment with Sept. 22.

sleeping is still hard lately, and nighttime in general, but my daytime anxiety has kind of taken a break for now...just cant seem to get back to work...i have now missed a whole week, and will also miss next week as well. spending and not making. my girlfriend is a saint, and cares for me deeply.

also, i can not thank all of you enough for your ongoing support as well.

-T

[home-based-mom]

what exactly is caesin? and how do i cut that out?

-T

Casein is the protein in dairy products. You cut it out by avoiding all milk, cheese, butter, yogurt, anything that contains milk. Fortunately milk has to be listed as an allergen, so label reading is a must. It is quite possible to have anaphylactic reactions to casein if you have an intolerance to it.

[Jaimepsalm63]

The worst part about the colonoscopy is the prep. I've gotten one every year since I was 27 because of colon cancer. Stick with the liquids as prescribed and you'll make it through.

I've never heard of the prep you're doing. My doctor insists on something else to really "clean me out". Is that the stuff that is about a gallon or two of solution you have to drink every hour? If it is I'm afraid that's not the stuff I do so I couldn't help you with what's in it. I know though that they wouldn't give you anything with gluten in it if you've already been dx with Celiac or even suspect it.

Hang in there. Hopefully this will get figured out sooner than later.

[TimothyRyan]

thanks... yeah, its like two liters of stuff i have to drink. im dreading sunday more than monday. monday im actually kind of looking forward to, because of the possibility of hearing NEW answers....

also whats the dif between cutting lactose and caesin? ill do both for now, just wondering....

but i also have the dread of hearing "theres nothing wrong with you."

[home-based-mom]

also whats the dif between cutting lactose and caesin? ill do both for now, just wondering....

"Lactose" is dairy sugar. "Casein" is dairy protein. When you eliminate dairy, you eliminate both.

Lactose intolerance (as far as I know) causes some painful and unpleasant digestive problems, but enzymes are available to help some people digest the lactose and be able to consume at least some dairy products if that is their only issue.

Casein intolerance - as with some other protein intolerances - can be fatal. There is no "magic pill" to take in order to be able to consume dairy products. The smallest of quantities can result in a trip to the ER, hopefully in an ambulance with trained EMTs.

[TimothyRyan]

hey all, with all the advice, and trying to take it all at once, it seems to really leave me with nothing to eat. can anyone help me try to figure this out?

if it is gastroparesis, then solids are a no pretty much for now correct? including chicken, because meats tend to be hard to digest anyway.

and then to cut dairy as well. im struggling. i go to sleep really weak, fatigued and iratable, and i wake with a very similar feeling, and still the burning and fullness, and bloating in my stomache. Not even hungry. i even feel like making my self throw up right now, first thing in the morning, based on how it feels, but i never do that.

at this point, i would try smoking pot to gain some hunger/relief if i didnt already have so many panic/anxiety issues right now.

why do doctors take so long?