This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I've started to feel a bit down today... tired, mild headache, grumpy, jumpy vision. It isn't a strong enough reaction yet for me to think it is truly gluten (yet). I'll continue with the gluten challenge until Tuesday night, when my diet with the dietitian begins. I'll speak to her about it.
Yes, the MRT will most certainly NOT diagnosis anyone with gluten intolerance or Celiac... so it is absolutely not a substitute for a test through a gluten free diet and then a gluten challenge. I took this test to see if there was anything else going on, so I could better tailor an elimination/rotation diet from it. Considering I *have* felt better since being gluten free, I will probably dive back into gluten free once I am done with this gluten challenge and working with the dietitian.
I had also been casein free for about 3 weeks and started eating yogurt again this weekend as well. Still waiting on a significant response from both of these proteins.
Thank you for the link! I'll definitely check it out because I have noticed I've become annoyed by scented and cleaning products recently.
Since I've already paid for the MRT testing and gotten some results, I'm going to run with it for now. I know that it will not catch everything... so if my initial few weeks of elimination based on it are not cutting it, then I will go more strict with the RPAH elimination. Wish I had found that RPAH diet earlier...
Thank you both for your responses! Sure hope this all works out!
I've decided to start a new thread based on my LEAP MRT test results. You can see it here:
I'm beginning to think I *might* not be gluten intolerant due to no reaction from a gluten binge after 4 weeks of being completely gluten free... and yes... I'm certain I guarded against all cross contamination even through the holidays. I wonder if 4 weeks was long enough of a test.
I'm updating this post in case anyone ever researches my thread and because I *HATE* unresolved threads whenever I do net research.
I thought I would start a new topic, as my original thread is getting very long winded and this topic possibly deserves it.
Here is my original thread if you would like to view my story, undiagnosed symptoms, and many doctor failures:
I will make one more post on that thread leaving a link to this one in case someone needs it to follow along.
Before I go over this I would like to point out that I have been STRICTLY gluten free for 4 weeks (including body products). Yesterday and today I binged on gluten and have not had a single negative impact so far... leading me to think gluten free may not be my path.
LEAP MRT test:
It is by Signet Diagnostics, and is a blood test measuring food sensitivities (not allergies, and not intolerances... so Celiac and gluten intolerance it wouldn't pick up) to 150 different foods. Food sensitivities give a delayed negative impact. Basically, I'd eat shrimp today and get D tomorrow... The test is new, and I'm sure not devoid of controversy. Going to work with a dietitian based on these results for an elimination and rotation diet. Apparently food sensitivities can change based on how much you consume 1 food.
Reactive to the following:
- Sodium Metabisulfite
- Sodium Sulfite
- FD&C Green #3
Moderately Reactive to the following... worst in italics:
- Fructose, Lecithin, Ibuprophen, Salicylic Acid, Cottage Cheese, Cow's Milk, Cane Sugar, Banana, Mushroom, Green Pepper, Buckwheat, Millet, Barley, Rice, Shrimp, Egg, Lamb, Turkey, Cola Nut, Baker's Yeast, Lentil, Peanut, Cashew, Pecan, Pistachio, Almond, Lima Bean
My thoughts on the results:
First off, I have felt better since going gluten free, but the lack of any negative impact from my gluten binge has me thrown.
Okay, the milk and shrimp thing I understand. I've had reactions to those specifically. The sulfites I get, because I've become intolerant of wine . Now, gluten free has *forced* me off of all processed foods, so almost removing sulfites from my diet aside from the raisins... maybe that is why I feel better?
MINT??? Are you serious???? I would have *never* even guessed that. Considering toothpaste and mouthwash I consume mint every day. Peaches and tilapia I very rarely consume and can't think of a specific reaction to them, but that was before I was paying attention to food.
I begin the recommended elimination diet on 1/5/11. If there is enough interest in this topic, I will update you as to the results of my diet. I *must* gain at least 25 pounds for me to consider myself back to normal. So there is my new years resolution...
Let me know what you think of this, and if you want any updates. I'm going to talk to the dietitian about going back on gluten free and see what she thinks, but I'm beginning to think I don't actually have a gluten intolerance... I remain unconvinced of everything though... :/ See my profile page for results of every blood test I have had done in the past year to figure this out if you have any questions about previous tests.
Happy new year and may this year be better than the last!
Hi Sarah! Thank you for your reply. The newest developments aren't terribly exciting. I've canceled my adrenal and thyroid tests, because I feel too "good". I want my adrenals tested when I'm doing bad. All my vitamins came back normal. Whoopdedoo.
I've been gluten free for a few weeks now and feel pretty good in comparison to the usual. I've dropped to about 106lbs and am reacting to foods I've never had a problem with. (I am buying everything whole and making everything with just salt, pepper, and butter. Also revamped my personal care products). Because of the continuing drama with my stomach and my fear of eating I've decided to do a LEAP MRT test... if for no other reason than to remove my fear. Going to work with a dietitian to come up with an elimination diet based on that. I'll know more after Christmas.
LEAP MRT has a note of controversy around here, but at this point, I figure it can't hurt anything but my wallet. If anything comes of that I'll start a new thread.
So far I am gluten, soy, and nightshade free for two weeks. I've reintroduced casein (lactose free) and feel a bit off but I don't know yet if that is because of casein or just me lapsing on my vestibular exercises. Of course I've been eating butter so I haven't been too strict on that. I figure I will give the gluten free diet around 2.5 months to show improvement. I've found a cousin of mine is gluten intolerant (she has skin problems, no GI symptoms)...
My thyroid is slipping back into a hypo state, which is not too much cause for concern for me. Hoping I can use it to my advantage and gain weight. Come February, I'll get it retested and start on sheep thyroids and adrenals and see if that helps... plus stay off the soy.
I don't have much else going on regarding everything. I just hope I can gain some weight. Overall I am doing much better... but this is how it does. I get better for a while, then eat or do something that triggers a relapse and I am back to square 1 shaving off 5 pounds each time.
Okay... more test results in. The new stuff is down below and everything is on my profile page. They tested my adrenals and thyroids. Everything came out negative of course. There was some errors made by the lab, so I'm getting it redone on 12/13/10 as well as a more thorough screening of my thyroid (TSH is 4.44 per latest test).
The only blip on the radar with these tests were in the Automated Differential blood test. My neutrophils was a bit low and my lymphocytes was a bit high. This suggests infection of some kind, and perhaps dietary deficiency or Addison's. The internest didn't even mention it or point it out... so obviously it is no cause for concern to her.
ANA is borderline...
Her diagnosis was vestibular neuritis that I just can't seem to kick. So, then I broke down into tears telling her that it isn't matching many of my symptoms, and if all my tests results are normal/negative... how can I feel like such **** all the time?? Of course all the blood tests were done when I felt pretty good. So there is that...
Tomorrow I'm testing my B12 and I'm beginning an elimination diet for Gluten, Casein, Soy, and Nightshades.
If I'm not significantly better by end of February from this... the interest is talking about sending me off to Mayo Clinic. Oh joy.
11/15/10 Adrenal Testing NEGATIVE
ACTH Stimulation Test
Cortisol Base ACTH -- 20.2 ug/dL (4.0-22.00) time: 8:34
Cortisol 60 Min Post ACTH -- 30.8 ug/dL (no ref range given) time: 10:22
Errors by lab made... redoing test on 12/13/10
I also don't think the doctor gave me all the pages
11/15/10 Analyzer/or Components NEGATIVE
ANA Screen -- 0.94 Units (0.00-0.99)
1.0 and greater is positive
Screens for autoimmune
Also picked up some labs from my GP regarding my thyroid:
12/04/09 TSH -- 7.020 (0.450-4.500 ulU/mL)
Started levothyroxin 125 micrograms daily
12/18/10 -- Woke up with dizzyness, hot flashes, diarrhea, fever, nausea, nystagmus etc, etc (migraine the night before). I cut back a little on the levothyroxin thinking it might be the cause
12/24/2009 TSH -- 4.800 (0.450-4.500ulU/mL)
Still ill. Stop taking levothyroxin. Got to Endo doc in February, says TSH is normal. Take no levo at all..
8/26/2010 TSH -- 3.34 (0.25-5 IU/ml) On *NO* meds
Vitamin D 8/26/10 -- 34.0 (32.0-100.0ng/mL)
Awaiting testing on adrenal system, various others, and another TSH. Follow up with Internest 11/24/10
So, let me know what you think of all this... also is 125 micrograms of levothyroxin a normal starting dose?
Hey everyone! Just an update on my continuing waiting game... still waiting on Celiac & IBD blood tests. As well as ultrasound on the liver/gallbladder. Should be talking to that doctor in about a week or two.
A *new* development... I had my first internal medicine dr appt today, and she is currently leaning towards some sort of hypoadrenal disorder (like Addision's Disease) and has ordered the following blood tests:
Cosyntropine stimulation test (adrenal gland test)
Serum ACTH level (adrenal)
CBC (complete bloodcount)
CMP (overall health test of some kind)
She is of course interested in whatever comes of my tests with GI doc. I pressed going on an elimination diet and she said she wanted to wait and see what all these results came out to be. I go for testing this Friday, and follow up with her on the 24th.
No matter what comes of all of this, I think I want to go on an elimination diet anyway. Food has hated me for so long I now hate it back... I'm scared to eat anything. Had some chicken and rice earlier and it sat in my stomach like a sack of rocks. Oh, and this weekend I ate a big baked potato and wanted to vomit for 3 hours. I'm thinking that even if I do not have any food intolerances at all... at least an elimination diet would help ease my fear of eating.
110.8lbs and counting... down 3 pounds from last week. I nearly have the anorexic runway model look down. :/
Thank you for sharing and I hope you can figure everything out soon! Just keep in mind, even if you test negative on everything you could still have some sort of food intolerance... so consider a special diet no matter what anyone says. Might want to schedule an appt with a dietitian or internal medicine as well. Good luck at getting better!
Honestly it is like you are reading my mind. Over the past week I've pretty much convinced myself I need to go on an elimination diet because I'm also concerned about yeast, casein, fructose, and nightshades. However, I do not want to do it without a doctor's guidance and blessing.
As of right now I have no results to show. I had blood drawn for Celiac and IBD, as well as a stool sample taken, and an ultrasound of my liver and gallbladder per gastro doc's orders (though he does not sound optimistic that he will find anything). I'm supposed to call him this Wed and schedule an appt to go over everything. Also, this wed I have my first appt with an internal medicine doctor. I want him/her to check out vitamin deficiencies (B's, D, K, folic acid, calcium, etc) and also was going to press for them to somehow test my hormone levels. I never considered the adrenal glands... and I have not thought about revisiting the thyroid issue as well.
Regarding my thyroid, I went hypo late last year, went on levothyroxine (125mg???) for a two weeks and then my entire system crashed with the thing that happened in December. One doctor thought I was reacting to the meds and shot me off to the ER... but they said my thyroid was fine. I quit the meds entirely because I'm not trusting them. Fast forward 2 months, I have my thyroid retested (not on meds still) and they say it is fine. I had it tested again in September (no meds for 9 months) and they said it was fine again.
As for sleep, I have had insomnia for a few years. Never was a good sleeper to start with and the Welbutrin (anti-depressant) does not help. It got so bad about 2 years ago I was rotating between nyquil, benadryl, alcohol, ibuprofen to get to sleep. I am now on Ambien and take 5-10mg every night. Also have a box fan on full blast 2 feet from my head every night so sounds don't bother me (cats, neighbors, snoring fiance).
Migraines are new for me. I've had very very few this year (maybe just 1 official one) because I am being exceedingly careful. I had only had a handful last year. The one in December taking the cake. However, though obviously painful, they are not near as bad as some people get... or as bad as I would expect them to be. And no... nothing seems to be aligning with my womanly cycle. Though I am on the pill... so that could be suppressing hormonal problems. Both my mother and sister had ovarian cysts, and I've been on the pill since I was 14 and have had no problems. My last period was very odd though. Exceeding dark and... sticky. I figured it was because of my newest bought of weightloss.
Speaking of weightloss... on Monday I weighed in at 114. This time last year I was 145. I look gross. Weight loss is mostly from me just not eating enough.
So far my list for the internal medicine doctor is:
food intolerance tests
We shall see. I'll keep everyone posted on the results.
Well that is certainly a relief! I've swung from D to C in one day flat, and other than that feel temporarily cured. I know it is all a ruse and something will make me sick again eventually until I get this fixed.
When on a gluten filled diet, did you ever have symptoms that were episodic? I have a few, rather minor, but annoying problems when I have a stretch of good days... and then something will set me off. My last relapse/attack was due to eating 2 Chili's mini big mouth bites. I got extremely nauseated and then woke up the next day with vestibular symptoms, and of course the usual intense nausea, D, exhaustion. All of that led to a huge crash of my system (which is what is making me think I have some sort of autoimmune triggered by food). Weeks and 7 pounds lost later, I am going beginning to go through a "good" phase again. High fat restaurant food seem to do me in, along with wine and once chocolate.
I have not been diagnosed with Celiac, neither have I started a gluten free diet. I am waiting for test results and various other doctor's visits.
I'm just wondering if it is ever possible to have a sudden swing in symptoms with Celiac, and then a stretch of "okay" days? I've nearly nursed my stomach back from the brink and am feeling better (chicken and rice ftw)
I'm considering going on an elimination diet after all doctor's have ruled out other things. I have a previous post with my symptoms: I'll post doctor's result on that older thread. I want to check out casein, yeast, and fructose intolerances as well if I go on the elimination method.
I'm comfortable sharing any and all. I think I'm going to ask for copies of *everything* from my GI doctor this time... We get to wait a little while though. Also toying with the idea of genetic testing if he pushes back on endoscopy (or if insurance doesn't cover it).
Thank you guys for your encouragement! I went to the GI doctor on Monday, and he has ordered blood tests for Celiac and IBD. Also had an ultrasound of my liver and gallbladder... and stool sample (that was not fun...)probably to check for colitis, parasites, and what not. He said that Celiac was a reasonable judgement call to make, but that it is "really very rare". :/ I almost wanted to correct him, but decided not to anger the fellow who could help me. It will be about 2 weeks before I get results because the blood must be shipped to CA for testing. In the mean time I'm continuing to eat lots of gluten, in case he by chance wants to to do an endoscopy.
So here is my vague plan. If the blood comes out negative and if he does not want to do the endoscopy (or even if the endoscopy comes out negative), I'm going to go gluten free after the holidays (immediately if I get a positive of course). He is reserving all judgement, but suggested he may not find anything and I may have to take a holistic approach. If I go gluten free for 3-4 months, it will kick me off of the processed foods, fast foods, and most restaurant food, so no matter what, that would be good. Unless I feel 150% on the diet, I'll try to reintroduce gluten to see what it does and adjust (or not) accordingly.
If however, if I'm negative on everything and gluten free is not helping (along with a myriad of other doctors I'm probably going to try) I'm going to consider going to the Mayo Clinic in Jacksonville, FL. I used to live there and it is the gold standard in the southeast for diagnostics.
Current good news is that I am starting to bounce back a little from my last relapse (or whatever the hell it is). Bad news is I found out on Monday I am 114 pounds (I'm 5'6" and this time last year I was 145... weight loss seems to be mostly because I'm just not eating because I'm so sick).
I've spoken more with my fiance, and he seems to be agreeing with me that a Celiac diagnosis would be good news. Hell... I'll be happy if I get any diagnosis. He's making a list of "final meals" to share with me if I get a positive on the blood. Sad and cute at the same time. Damn Louisiana and their wonderful roux sauces.
As for the cooking and everything, I'll be good. I'm already adept at making a lot of things from scratch (yogurt is my next adventure I think) so I will be good. The hard part will be restaurants (we do like to eat out a lot, so that will have to decrease) and traveling. Especially if any of my family members decide to make something gluten free just for me (!!) and screw up by flouring the pan or something. My biggest concern is the social impact this will have... but if it will make me feel better, I can deal with that.
I bought Elisabeth Hasselbeck's book on the gluten-free diet and read the whole thing on Sunday. I feel much more comfortable with my decision now and what awaits for when I go this route.
I'll keep everyone updated, since I'm not experiencing any classic pain or bloating, and have a lot of vestibular problems this might be interesting to see what comes of it. Thank you all so much for your encouragement. I hope I can get this resolved... I want my life back.
Thank you for your reply! I believe the majority of the reason no one has even glanced at my GI problems is because they are focusing on my vestibular problems. I asked my ENT if he has ever heard of or noticed a relationship between vestibulopathy (the IBS of the ear world) and Celiac/gluten allergies/any allergies. He said *maybe* Meniere's and food allergies, but not Celiac. I guess I can't thump him too hard... But my GP I want to strangle!!!! I have an appt on the 11th with an internal medicine doc as well. Gasto tomorrow.
I have been absolutely certain to practically binge on bagels, saltines, cereals, cookies, and whatnot for the past week so I am less likely to get a false negative. If I come out negative, I'm probably going to push for a biopsy anyway.
If I was on my own, I'd just go gluten free and call it a day... but I live with my fiance. I *need* a positive diagnosis in order to convince him of this lifestyle change, because it will deeply impact him too. He is already freaking out, thinking of all the things we will not be able to do. I keep telling him if this is my problem think of all the things we will finally be able to do again once I am not sick anymore... but it isn't sinking it yet. If I get a positive diagnosis, working with (ie: confronting) my family will be much easier. I bought Elisabeth Hasselbeck's book "The Gluten-Free Diet" today, and have already read 2/3 of it. It is at least calming me down.
Hi, my name is Jenny and this is my first post here... and it seems as though it certainly won't be my last.
I am 26 and I have never felt "right". Ever in my life. My health problems came to a head last Christmas, from a sudden vestibular problem that I am still battling. It started to dawn on me that all of my health problems might could be rolled up into one package - Celiac disease.
Tomorrow afternoon I have an appointment with a gastro doctor and I am specifically going to ask for Celiac testing. Considering everything I have gone through over the years, and the rapid deterioration of my health during the last year, it has gotten to the point where I hope I have Celiac... *THAT* I can treat.
I want to write out a quick run down of my various problems and am hoping I am not completely insane for thinking this might be Celiac. Any input would be appreciated (as well as any alternatives I should be trying), and if I do turn up positive, I'm sure I will be on these boards much more often.
Psoriasis - Diagnosed at age 6, finally dormant at age 24
ADHD, inattentive type - Diagnosed at age 8, battling ever since
Unexplained trembling - All my life... 24/7. Worse when hungry, ill, or stressed
Low blood sugar - Age 14 the symptoms became apparent and progressively worse through the years. From age 23 to now it has become a serious problem
Prone to depression since age 14, put on anti depressants for this and ADHD at age 16
Generally sensitive stomach since 22
Lactose Intolerant (self diagnosed) shortly after turning 25 (mid last year).
Extreme blood sugar crashes, Vitamin D deficiency, hypothyroidism around Thanksgiving last year. Sensitivity to food increasing (not pain, but nausea, full to fast, slow digestion, diarrhea, constipation... etc).
Dec 18, 2009 - extreme migraine. Vestibular Neuritis. Nystagmus, Vertigo, hot flashes, fever, diarrhea, nausea, palpitations, numerous worthless ER and Doctor trips. Lose 20 lbs in two weeks flat. I am the walking dead.
January 2010 - Catscans; MRI - nothing
I have been horribly ill ever since then, always hungry, and either unable to eat, or unable to fill up. I look anorexic having lost so much weight. My breasts have shrunk to just below an AA and I can barely make it up a set of stairs without my heart rate elevating. Lately I have been re-diagnosed with Vestibulopathy after an ENG, which is an autonomic (peripheral) disorder. I have numerous other symptoms I have not listed, but everything seems to be stemming from these problems.
And another thing... Alzheimer's runs in my family on my father's side and I have read of a recent connection made between Alzheimer's and Celiac.
Let us hope I am not insane. If I don't have Celiac's I honestly don't know where to go from there. I'm so anxious!! I feel like I am slowly dieing. I'm sorry for such a long post. Thank you for reading and any thoughts you may have.