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 am frustrated. I went to the Ear Nose THroat doc today who basically said I need to see and endocrinologist for this type of stuff. I wrote my primary care doc asking for the t3 and t4 tests and she said that because my TSH was fine 5 months ago that there is no reason to order these new tests.
I wrote her back a long email telling her how things have changed and that 5 months is a long time, especially since I went Gluten free 4 months ago, giving any thyroid problems a window to show up. An auto reply email came back saying that she is on vacation for a week.
Kinda pissed off and frustrated. I was looking into ordering the labs myself through the web, where they go through labcorp. what do you think about that idea?
This is a great statement. I have been struggling with this a lot. It boils down to the notion of whether or not one believes that the mind can cause such severe psychosomatic pain. I mean, can a fear or worry have such a profound effect on the physical state as to cause damage to the intestines and make us feel all the symptoms of celiac? Or does one believe that the symptoms originate with celiac and the psychological issues are conflated and confused by them?
the theory that the simplest answer is usually the best shows me that it most likely is that celiac is causing the problem, and the psychology is being dragged along for a ride.
I believe that my biggest symptom is anxiety, just like the other posters on this thread. I have been an anxious and worried personality my whole life, but I had gotten it under control and was really doiing well, emotionally and mentally. Then about two years ago I started to feel not quite right, after 6-8 months it developed into a full blown panic/anixety disorder, then it got even worse, and then about 8 months ago I was finally tested for celiac.
It has been 5 months since i started the diet and I have to say that I am feeling quite a bit better, and the anxiety level has gone down from an 11 to maybe a 5-6, but it is still somewhat high. I would love to get it back down to a 2 or 3 (which i feel would be a normal amount, like when I was in good shape a few years ago).
I have to remind myself that this is a major process of healing a very damamged body. It doesn't happen overnight. The problem with an anxiety disorder is that your brain wants to see it fixed right now! if it doesn't get fixed instantly, its just more fodder for the anxiety monster to use against you.
Yes, for me the emotional symptoms were and remain the most powerful. After the first 2 weeks I felt really good and felt like I was making strides. Then it hit me again and i felt so dissapointed and discouraged, and I went into a deeper hole than i was even before i found out. It is a roller coaster ride, i would say even now 5 months into the diet it is challenging and has its ups and downs. If you remember math class my feelings go up and down like a wave, but the trend line is pointing up, if you know what i mean.
After 5 months I can objectively see how much better I feel, but in the moment, when something bad happens, or you eat a little gluten and react, it can feel like the whole effort was for nothing and you are a failure. You have to resolve to push through the tough moments. I still fight that battle most days.
It is nice to be able to come to the forum and get reassurance and support. You are headed in the right direction.
I have only had the TSH level checked, which came back normal range. But I have read that does not really mean anything and the full tests should be done. Thanks for all the responses. I just get this feeling from kaiser that they know better than me what I should be suspicious about, and that the TSH was normal there is no reason to go any farther.
I really hope that there is something up with the thyroid so that it helps me understand the continuing symptoms. Ever since this whole thing started I have become a different person and I want to get back to the person I was and can be without my health causing me to second guess everything and avoid responsibilities.
"Symptoms of Graves disease are those of hyperthyroidism and may include anxiety, restlessness, irritability, emotional instability, inability to concentrate, fatigue, muscle weakness or cramps, heat intolerance, and increased sweating. Periodic paralysis with low potassium may occur in men with hyperthyroidism who are of Asian, Filipino, or Native American ethnic backgrounds. Cardiac symptoms can include palpitations with a fast or forceful heart beat, shortness of breath, atrial fibrillation, or angina. Patients may also have a tremor, eye stare, and changes in hair. Osteoporosis can occur if hyperthyroidism becomes chronic and is left untreated. Women experience menstrual irregularities. Bowel movements may become more frequent."
when I look at this paragraph it virtually describes my current and previous symptoms. I have been gluten free since march and feel extremely better. my constant anxiety and worry have abated to about 25% from a over 150%. I was a nervous wreck.
my symptoms: Anxiety- still present and intrusive; Irritability- frequent; emotional instability- definately, ask my wife!; concentration- i can barely get interested in anything anymore; fatigue & weakness- after minimal exhertion i sweat a lot and feel really weak; heat intolerance- I am always wearing sweaters in the summer and being hot when everyone is cold. my internal thermostat is wacky; Sweating- yes, at odd times; weight loss- about 15 lbs in a month; heart- skips a beat, beats fast, etc;
My question is: all of these symptoms are on the list for celiac. It has been 5 months and I have seen dramatic improvement in my well being. Could I just be still in healing mode from celiac and that is why I still have these symptoms? has anyone else gone through celiac only to find out that hyperthyroidism is a complication?
I have a doctors appointment next month with a ear nose & throat specialist to review my situation. Any advice on how to approach them with this so they don't think i am a hypochondriac? Its kaiser so they don't seem to want to get too deep into a conversation or diagnostic routine. any help would be appreciated.
I was recently diagnosed with Celiac, but my first indication anything was wrong was 6 years ago when I saw a GI doc about elevation ALT and Bilirubin tests. I was diagnosed with Gilbert's syndrome, which is a naturally occuring elevation Bilirubin.
Now that I know I have celiac I think this was a precursor or indication of something not quite right about my digestion. All they can say now is I have a fatty liver, not that it is connected to Celiac. However if you read up on the links between Celiac and Liver issues it seems like a strong link between the two.
Just wanted to say that your post echoes my own experience very closely. I am now exactly 3 months into it and have been struggling with a lot of ups and downs. I now know exaclty what a glutening reaction is, but most times cannot pinpoint what it was I ate. I know I should be hypervigilant and only eat things I know are ok, but it is really easy to get a false sense of security when something says its gluten free. Lately I have been having problems with the cross contamination. Grilles, pans, toaster, etc.
At the three months I have felt soo much better it convinces me I am celiac for sure, but then the next day I will have a really bad reaction to something and I gets me anxious, depressed, and doubting all over again. It is such a roller coaster sometimes. But I can see that I have made improvements in three months, and I am excited about the improvements I will see in the next 3 months. It is a long process and I know there will be more ups and downs along the way.
The hardest part is going through it without much information. Nobaody knows how you specifically will react to the diet changes and how fast you recover. This guessing game can lead to a lot of self doubt and insecurity. Just have faith that you are going in the right direction and someday soon you will see small improvements turn into big improvements and maybe you will eventually forget how bad you once felt. I feel like I am halfway there.
I used to play volleyball and would love to get back to that. i tore my ACL 2 months ago so unfortunately I can't be very active. I just need to keep telling myself that this is a disease with very powerful symptoms. I have to disconnect the ill feelings with the negative thoughts. I have to accept that this disease has caused a lot of pain and will take a long time to heal, but I will heal. I have to give myself space and allow myself to feel sick. For too long I have turned it around in this way: 1. I feel sick, 2. well there is no reason to have a stomachache, 3. do i feel sick because there is something wrong with my life? 4. Well lets look at all the things that could be wrong, 5. hmm, maybe my job, maybe my life, etc. etc. you get the point, until I reach the lowest, scariest thoughts and have a panic attack.
Being a mental health specialist I am sure you understand these mind games.
I still feel nausea this morning but am in better spirits. I think I can get through the day without a panic because I know I must have gotten glutened on friday and am still dealing with it. Thanks for listening!
Hi guys, its been about a month since I posted this topic. My experience since than has been a lot of ups and downs. Today is a bad day and I needed to share. I have had many good days this last month and have been trying really hard to watch my food. I have found that dairy is really bad for me right now, but have caved in a few times and had some ice cream or milk in coffee.
I get so discouraged when I have a bad day, and I forget how good I have felt on the good days. in fact just yesterday was a great day. Had a confidence breakthrough at work. Woke up this morning feeling terrible and have been depressed the whole day. I just feel sometimes like I am broken. Like this will never get better. for 2 years now I have associated bad thoughts with ill feelings and it is so easy to continue that behavior. The brain-gut connection is so strong and i feel like i am at its mercy. if i have a stomachache, it must mean that whatever negative thought is in my head must be true. Do other people feel that way?
I didn't even think of it until now, but I had physical therapy 18 months ago for upper back & neck pain. Just believed it was bad posture, but now looking back and at the same time I developed neuropathy in my fingers it now all makes sense... BTW i am now 33 so this started when I was 31.
Ok, just need to vent. I am currently with Kaiser and I my history of this diagnosis is as follows:
1. Primary doc orders TTG test, comes back positive. She told me it is possible celiac, tells me to avoid gluten and refers me to GI department.
2. GI doc calls me for 5 minute phone call and orders a endoscopy.
3. Different GI doc performs endoscopy, tells me she suspects she wont find anything
4. First GI doc calls me to tell me they did not find "Classic finding of celiac" on biopsy.
5. I get the report myself, and it states that they found "focal partial villous blunting, the significance of which is unknown"
6. After a strongly worder email, first GI doc then says I maybe could have a "mild" form of celiac, refers me to dietician.
7. First dietician calls me, luckily she has Celiac so is really knowledgeable. Sets up appointment for a different dietitican.
8. Second dietician is clueless and refers me to a pamphlet she got at a celiac conference last year. otherwise she has nothing valuable to tell me.
9. First dietician calls me again, says, "oh, i dont think you have celiac. Wait. let me look at your test results. oh, maybe you do have it. either way you should have your primary doctor put in your chart gluten intolerance" so that if I am hospitalized, they wont try to feed me wheat.
Between the 5 different medical professionals, all i get is wishy washy, maybe yes maybe not answers. None of them has taken any time to actually listen to me and see the whole picture of my symptoms and now succesful early recovery on a gluten free diet. If one of them actually had more than 5 minutes to spend with me they could put it all together like i have. Positive TTG, Biopsy findings, Elevated liver tests, low Vitamin D test, chronic diarhea, gas, heartburn, canker sores, brain fog, anxiety, depression, peripheral neuropathy, etc... and now 6 weeks gluten free and i am starting to feel like my old self again.
I am just frustrated!!
Sounds about right. I was feeling much better 2 weeks ago, then it slowly crept back. Now I am looking into the other foods, such as milk, cheese, coffee, nuts, etc. to see if removing any of them helps me.
My Vitamin D was on the very bottom of the normal range. Have been taking supplements
Just started taking a probiotic
I think I am, but it might not be as filling as before. Lots of salads and fruits.
I have kept one since April 17th, the day after my endoscopy.
I know they are there, and I guess its a little selfish to expect people to come to one thread and rehash them. I guess I was just looking for some reassurance that its rocky in the beginning and that one month on gluten-free diet may not make a drastic change.
Thanks for your response.
This post won't answer any of your questions, but I was just thinking about posting almost this exact same topic but had not gotten around to it. I was diagnosed in mid april through blood test and biopsy and have been gluten free for a little more than a month.
At first I sensed some big changes in my mood and symptoms. Now a few weeks later I feel like I did before the diagnosis even though I have cut out all the gluten, and eve dairy products. I just feel discouraged that I am not seeing all the symptoms clear up, in fact things are worse than a few weeks ago. Nausea, diarhea, stomach ache.
I am just wondering if other members who have gone through the healing process can speak up and give us their stories about how long the recovery was for them and how the symptoms lasted or dissapeared. It would help so we can see hear first hand about how long of a process this seems like it will be, I know that would help me deal with this.