Lost And Confused And Sad

[marie33]

Well I have had two negative celiac blood tests. But I know this is what I have. I get sooooooooo sick from wheat. Symptoms are severe bloating,alternating constipated,diarrea,acid reflux,ibs,gastritis,anxiety,depression,exhaustion,fatigue,muscle aches,joint aches, stiffness,nasea,stomach cramps,pain or severe discomfort in my stomach,extreme irritability,mood swings and brain fog, geo graphic tongue, skin itchiness with no rash, and constant sinus poblems,itchy throat and ears inside most of the time...

If I avoid wheat almost all the symptoms disappear and the ones that don't are 80% better. I believe my children have it as well but have tested negative for the blood test as well. They have most of the same symptoms as me.

The only thing they told me was I had a low IGA count. Not sure what that means???

Has anyone had a celiac blood test be negative to find out they are a confirmed celiac.

They other day I just broke down and cried and cried because it makes me feel so sick but my doctor told me I was silly to avoid it because the blood test was negative. My gastrointestinal discomfort is exruciating at times. I don't want to feel sick all the time so I have went on a gluten-free diet again it's the only time I feel amazing.......

Sorry to dump on everyone but I really need all of your smarts,support and advice...

thanks LUV Joannie and familyxoxoxoxo

[Jestgar]

Well honey, you aren't lost anymore 'cause you've found us. And the only thing you're doing that's silly is not avoiding your under-educated doctor.

Some MDs put to much faith in tests, and not enough in clinical diagnoses. If it makes you feel bad, don't eat it, and spend your new-found energy looking for a new doc.

[kareng]

This is from the Celiac Center in Chicago. It explains about low IgG. One of my boys was low but they told me not low enough to affect the test results. Also, you can email them with specific questions about the lab work if you include a copy of the lab. I assume you have seen the actual paper results? As we have found out here, some docs don't always seem to realize that a positive is positive.

Open Original Shared Link

One More Thing… People with IgA deficiency require a different version of the antibody tests listed above. The tTG and EMA tests have IgG versions and these tests will then be accurate for someone with IgA deficiency. IgA deficiency is diagnosed when someone has a total serum IgA test and the results are very close to zero (less than 10mg/dl). This is not a test for celiac disease, but a means to make a more accurate diagnosis.

For more information contact the University of Chicago Celiac Disease Center at 773.702.7593 or www.CeliacDisease.net.

[Marilyn R]

Don't sweat the negative test results. An earlier poster (a month or so ago) was denied life insurance from a few carriers.

Every test I've had shows I don't have celiac disease. But I have permanent nerve damage from consuming gluten, according to my neurologist. One Internist said she'd diagnose me on the spot when I told her my before and after story. It was nice to have validation from her, but she's young and brave, and perhaps from a different mindset than most doctors with Neanderthal mindsets about lab and biopsy results.

Don't be bummed, you figured it out before someone who paid a boatload of money to get credentials could figure it out.

[Skylark]

Your doctor is the silly one. He must have forgotten that kindergarten lesson of not eating things that make you sick! Isn't it amazing how medical school can make a person completely lose all common sense?

I've had three different doctors tell me not to even bother with gluten challenging to be tested because the blood tests are so unreliable. I have a lot of trouble if I eat wheat and they simply consider me celiac, keep an eye on my vitamins and iron, and encourage me with my diet.

[mushroom]

Your symptoms are all celiac symptoms. You do not need a doctor's order or permission to eat gluten free, and it is not going to harm your children if they eat gluten free too. But you do need a medical professional on your side to order some blood tests for nutrient deficiencies like Vit. D, B12, iron/ferritin, folate, magnesium, calcium, potassium, as low levels of these are the side effects of gluten intolerance.

Low total IgA invalidates any IgA celiac testing.

[marie33]

Thank you so much for all your support. I was just reading everything everyone wrote to my husband. He agree's with all of you. I feel so much comfort knowing I'm not alone in this. I just wanted say that when ever I have blood work done most of the time my iron is seriously low and they put me on iron suppliments as well as my potassium levels are low for no reason off and on they tell me to eat banana's.....Those are the two they mention to me all the time. I take vitamens and that helps some.

I feel sooooo good today. My stomach feels amazing and already the bloating is gone. My stomach looks flat. I'm just enjoying not feeling major stomach discomfort today..I have an appointment with another doctor to see if she will listen to me. But I have been to 3 of then thus far who all tell me it's basically in my head. they all go by the blood tests.

I'm just going to stick to a gluten-free diet because I love feeling normal.... I wish I coudl hug all of you because know one really cares and know one really listen's everyone is just tired of me complaining about these issues......

luv you all

[Reddy4More40]

You are not alone in this. I had a CAT scan, blood tests, stool sample testing, gallbladder scan, HIDA scan (gallbladder function),etc. plus upper and lower scopes.I too had negative blood test results and a negative biopsy but have been told by 2 Cleveland Clinic physicians that I have Celiac Sprue. The one physician told me they are seeing more people like us that have the disease yet have negative test results. The key is finding the right physician skilled in this specialty.

Hang in there!!! Trust your instincts are you know how you feel and your body better than anyone else!!

[GFinDC]

The celiac testing that is available is not 100% accurate. There are false negatives possible on them. So, it is not impossible to have celiac even with a negative test. I had blood antibody testing but I had to wait 3 months for an appointment to be tested. And my blood tests were negatvie. But I had a huge reversal of my symptoms after going gluten-free, and would not go off the diet. Your body knows what is bad for it, and it lets you know too. Your doctor doesn't have to agree. It's gluten free for thee!

There are other people on the board who had negative tests but still have celiac. There are also people who have non-celiac gluten intolerance (NCGI). They don't test positive but still do better off gluten. There hasn't been much research done on NCGI yet, but it is real for the people who have it. There was a study done in Australia not long ago on it and it showed some positive results. I don't have a link for that study though.

[mushroom]

I just wanted say that when ever I have blood work done most of the time my iron is seriously low and they put me on iron suppliments as well as my potassium levels are low for no reason off and on they tell me to eat banana's.....Those are the two they mention to me all the time. I take vitamens and that helps some.

You will continue to be low in the things you test low for until your small intestine heals and you can start absorbing nutrients from your food. Do have all the things I mentioned rechecked because 'normally ' by the time we realize we have a problem our levels are so low that normal supplementation will not cure the problem. It will be a long while before bananas will give you enough potassium The RDA's are ridiculously low. I take 50,000 iu vitamin D once a week, and B12 shots are now down to once every 3 months (used to be once a month.) Most of the iron you take by mouth probably is not being absorbed. Oh, and you should have your thyroid function checked too, TSH, free T3 and free T4.

[Bri69]

i got diagnosed though a scope. not a way to be diagnosed if you ask me but hey. ask for one. get a referral for a gi doctor and ask to get a scope up and down. if you have it there should be damage. i got diagnosed at stage 3. (not good) now i have an infection because food started to ferment in my intestines. so they have me on antibiotics. dont let it get that far. it sucks. my diet for the next month or 2 is no gluten no sugar no dairy. its hard to eat that way. get a diagnosis from a scope. thats all i can tell you. Good Luck! Let me know how it goes!!!

[marie33]

I have a scope booked for this wednesday because they want to know why my acid reflux is so severe... I hope that will show what it is....Thank you for your advice everyone (hugs) I went out today and bought all the gluten-free free food and I am going to get very serious about this. I don't want to feel like this anymore....Thanks for your encouragment.

[kareng]

I have a scope booked for this wednesday because they want to know why my acid reflux is so severe... I hope that will show what it is....Thank you for your advice everyone (hugs) I went out today and bought all the gluten-free free food and I am going to get very serious about this. I don't want to feel like this anymore....Thanks for your encouragment.

You will need a whole endoscopy, I to the small intestine, with multiple biopsies to diagnose Celiac. Just looking at the esophagus & maybe stomach isn't going to work for Celiac.

[txplowgirl]

Hi Marie, just a little advice. You don't have to buy the processed gluten free foods. It's best just to start out on naturally gluten free foods like plain meats, fish, chicken, vegetables, fruits, rice, etc. These will help you a lot better because the processed gluten free foods for one are expensive plus higher in carbs and sugars.

[marie33]

So bummed tonight. I'm so sorry to complain but I just really need you all. I'm feeling a little discouraged tonight. I have been off Gluten for about 3 days now and tonight I'm seriously bloated and I feel sick to my stomach. I don't know why....this is what confuses my mind.....

[sa1937]

So bummed tonight. I'm so sorry to complain but I just really need you all. I'm feeling a little discouraged tonight. I have been off Gluten for about 3 days now and tonight I'm seriously bloated and I feel sick to my stomach. I don't know why....this is what confuses my mind.....

Hang in there, Marie! I naively thought I'd go gluten-free and everything would be fine instantly. Sometimes it just takes awhile and we all want immediate results. And there's definitely a learning curve to feel comfortable with the diet.

I think today is the day of your scope? Hopefully the dr. takes a lot of biopsies. Don't know if he'll be able to visually see what's going on with you, but most of us have to wait until we get the pathology report in a week or so. You should come home with some beautiful colored pictures! Hope you feel better soon!

[WinterSong]

So bummed tonight. I'm so sorry to complain but I just really need you all. I'm feeling a little discouraged tonight. I have been off Gluten for about 3 days now and tonight I'm seriously bloated and I feel sick to my stomach. I don't know why....this is what confuses my mind.....

If you've only been on the diet for three days, you're probably going through withdrawal. One of those things where you feel worse before feeling better. Stick with it. Depending on the individual, amount of damage done, and age, it can takes a while to feel completely better.

[GFinDC]

Your body has to adjust to being gluten-free. The first months can be back and forth. Your gut flora need to adapt and re-stabilize with the revised diet. It's not just you that changed your diet, they are eating different food now too. Also you should start healing which is a big change also. Lots of new villi and lots more surface area for lots more bacteria to thrive. It is good to take some pro-biotics to help get the beneficial bacteria back in balance. It also can help to stop all dairy and soy and sugar. Bacteria thrive on sugar, and dairy is hard for us to digest at first. Soy is just plain bad for you. You are going through an adjustment phase, and it may take some time for things to settle to a new normal.

The simpler your diet is, the easier it is to deal with at the beginning. I hope things get better soon.

[marie33]

Thank you all for your encouragment. I read everything you all wrote and I will sink it all in. I feel alot calmer hearing what you all said....It means everything the encouragment because today I wanted to give up because it's so hard and I feel so blaaaa.....The comment about withdrawl that is totally how I feel.....My scope got bumped today because the doctor got called into the hospital. So now I have to wait again Anyway I will do what you all say and keep putting one foot in front of the other and hopefully soon I will feel better. I do know that my stomach does feel alot better no pain or discomfort..I feel soooooo fatigued though and I think it is from having such low iron....

Hugs to all of you...

luv Joannie...

[ravenwoodglass]

Thank you all for your encouragment. I read everything you all wrote and I will sink it all in. I feel alot calmer hearing what you all said....It means everything the encouragment because today I wanted to give up because it's so hard and I feel so blaaaa.....The comment about withdrawl that is totally how I feel.....My scope got bumped today because the doctor got called into the hospital. So now I have to wait again Anyway I will do what you all say and keep putting one foot in front of the other and hopefully soon I will feel better. I do know that my stomach does feel alot better no pain or discomfort..I feel soooooo fatigued though and I think it is from having such low iron....

Hugs to all of you...

luv Joannie...

Joannie, If you are going to have the scope you do need to keep eating gluten until the scope is done if you are looking for a celiac diagnosis. Doctors can look for other things if you are already gluten free but some of the things they may find could be being caused by the gluten, like irritation in the stomach and reflux for example. Those may clear up off gluten without any meds. What you could consider is just going gluten free and if you are still having a lot of symptoms after a couple months then rescheduling the scope to see if something else is going on. If you are going gluten free do read as much here as you can as you need to protect yourself from cross contamination if others in your home are still eating gluten. Recovery can be up and down for a while and you may suffer with withdrawl for a bit but hang in there. We don't get sick in an instant and it takes time to heal fully.

[marie33]

ok thank you! I will read into cross contamination because everyone else eats gluten in my house. I will maybe wait on the scope..I don't want to feel soooo sick again from having to eat it.

thanks for your help....hugs!

[jenngolightly]

I had a negative blood test for Celiac. My IgA and IgG antibody levels were very low, which pointed to antibody deficiencies instead of Celiac. My endoscope also came back negative from the lab, but the doctor had confirmed by sight that my villi were flattened. The problem is, if the doc doesn't biopsy the right places, they will come back negative. Unless you have a severe case of Celiac, your whole small intestine won't have flattened villi. That's why they're supposed to take many biopsies, just so they might "hit" one of the spots that has the flattened villi. So I had negative blood tests due to antibody deficiencies and negative endoscopy results due to inaccurate biopsies. But I DO have a doctor-confirmed diagnosis of Celiac disease.

How do I know? My wonderful doctor (not everyone can say that about her doctor) diagnosed me based on both my symptoms and on my recovery due to the gluten-free diet, and also hereditary factors. I had all kinds of problems due to Celiac - osteoporosis, anemia, GERD, neuro problems, insomnia, constipation, lethargy, etc... and they all cleared up when I went gluten-free and took appropriate supplements.

Your scope and blood tests may not diagnose you, but your reaction to the gluten-free diet will. If you get better because you stop eating gluten, then gluten is the problem. It may not be as comforting or make your family and friends believe you have a serious problem, but it is what it is.

Hope your scope goes well.

[sandsurfgirl]

So bummed tonight. I'm so sorry to complain but I just really need you all. I'm feeling a little discouraged tonight. I have been off Gluten for about 3 days now and tonight I'm seriously bloated and I feel sick to my stomach. I don't know why....this is what confuses my mind.....

I hear the anguish in your posts and it makes my heart hurt for you.

You have celiac disease! Screw the tests. The tests are faulty. They are inaccurate. They are barbaric. Your doctor is barbaric and uneducated. Dietary response IS a valid form of diagnosis. My son was diagnosed from dietary response and his little 7 year old life is changed forever for the better because of it. There are too many doctors out there like yours and I wish they all would lose their licenses. They are doing harm to patients with their ignorance. FIRE that idiot moron (insert many curse words) doctor yesterday.

Now about your symptoms. It takes time to heal. It took me SIX months to have ONE symptom free day. It takes time to get the diet right. You may be getting glutened in unexpected places.

I did not start really getting better until I changed my hair products, soaps, lotions and lipsticks. That stuff runs down your face in the shower, stays on your hands and gets in your mouth. People run their colander through the dishwasher and the gluten stays on that thing. If you are putting gluten lotion on your hands it will get into your food.

Do not despair. I was so sick when I was diagnosed, like thinking I was going to die. Yet only one out of the five blood tests was positive. Just one! You would think the whole blood test would be through the roof with how sick I was. During that first 7 months or so this place was my lifeline. Withdrawals and healing are so hard but SO worth it. At 41 years old I am healthier and happier than at 21. You will get better. I promise.

Use the search function on this board and look up withdrawals. Read old threads so you know what others went through and you know it's normal.

Hang in there! You are celiac! Yay! You get to join our club!

FIRE that jackwad dingle brain doctor!!! Or eat gluten and accidentally vomit on his lab coat. Or on his Mercedes. Or on his expensive shoes. He is an ass.

[marie33]

I hear the anguish in your posts and it makes my heart hurt for you.

You have celiac disease! Screw the tests. The tests are faulty. They are inaccurate. They are barbaric. Your doctor is barbaric and uneducated. Dietary response IS a valid form of diagnosis. My son was diagnosed from dietary response and his little 7 year old life is changed forever for the better because of it. There are too many doctors out there like yours and I wish they all would lose their licenses. They are doing harm to patients with their ignorance. FIRE that idiot moron (insert many curse words) doctor yesterday.

Now about your symptoms. It takes time to heal. It took me SIX months to have ONE symptom free day. It takes time to get the diet right. You may be getting glutened in unexpected places.

I did not start really getting better until I changed my hair products, soaps, lotions and lipsticks. That stuff runs down your face in the shower, stays on your hands and gets in your mouth. People run their colander through the dishwasher and the gluten stays on that thing. If you are putting gluten lotion on your hands it will get into your food.

Do not despair. I was so sick when I was diagnosed, like thinking I was going to die. Yet only one out of the five blood tests was positive. Just one! You would think the whole blood test would be through the roof with how sick I was. During that first 7 months or so this place was my lifeline. Withdrawals and healing are so hard but SO worth it. At 41 years old I am healthier and happier than at 21. You will get better. I promise.

Use the search function on this board and look up withdrawals. Read old threads so you know what others went through and you know it's normal.

Hang in there! You are celiac! Yay! You get to join our club!

FIRE that jackwad dingle brain doctor!!! Or eat gluten and accidentally vomit on his lab coat. Or on his Mercedes. Or on his expensive shoes. He is an ass.

LOL your so funny.... As I read your post well I laughed and cried and laughed and cried. It feels so good for someone to take me seriously. People look at me like I am a faker and a drama queen because I never ever feel good. I finally broke down in front of my best friend the other day and her husband after I had a glass of wine. Which hits me sooooo hard even one glass. I told her that gluten-free was going to be my new way of life and that I needed them to take it seriously and support me. She said she would. That was comforting. My stomach still feels great. My heart burn has stopped for now but I'm really cranky. My husband doesn't even want to be around me right now.

I still feel very fatigued because my iron is so low. The irritability is the hardest part for me at the moment. I have to keep my kitchen spotless so I don't get cross contamination and that is very hard with 5 kids.

Thank you soooooooo much for telling me your experience it makes me feel alot better.

This place is my new home and i feel so loved here already...

luv joannie

[marie33]

Also this morning when I woke up I almost fainted and I don't know why it was very scary. Have you had this.. I don't no if I got up to fast out of bed but left me feeling anxious.....