Maybe I Have Found My Answer =] I Hope Soii

[MrsAcE]

I found this site doing research on Anemia and extreme fatigue. I had not even added all my other symptoms that I assumed were other things. I have put on 90 pounds in a year! The doctor checked my thyroid and it was fine thats how they found my anemia. I was put on antidepressants for mood swings, anxiety, and depression. Iron for anemia. Meclazine for horrible dizzy spells. Omeprazole for acid reflux. Heres the rest of my symptoms that i really never put all together until now:

Swelling

Bloating

Migraines/tension headaches with dizzyness

Knee pain

Back pain

Joint pain

Shortness of breath

Itchy Scalp

Loose bowel but not diahrea

Feels like stomach is boiling

Gassy all the time

The need to burp but i cant

Full feeling yet hungry

Cant eat heavy meals feel like they will make me sick

Nauseous for no reason

Foggy brain forgetfulness unable to focus

Vision worsens yearly

Bloody nose

Always feel under the weather

I take a host of vitamins hoping to get back to Me what i use to be =[ ive always suffered from being tired which now i know is from anemia however i was still able to function in the last 2 years everything has slowly went downhill. My eating habits had not changed i do not eat fried foods, red meat, or fast food yet the weight wnt stop. I dont eat much processed food either. I am going to see my dr Thursday this dr told me all the above symptoms were due to my weight. My body hurts after i walk. I use to Zumba and take cycling class 1 year ago but my body would hurt so much after i gave up. I tried Zumba again 2 weeks ago and my body hurt for the entire week after. I have 4 children and a loving husband who I dont feel up to being an active Mom and Wife for. I hate feeling like this. As i type this im laying on the couch getting my feet and legs massaged by my husband because they are swollen, i had cereal for dinner because nothing else sounded okay for my stomach and my stomach is bloated like Im 5 months pregnant even though i will not be having any more kids. i am exhausted even though i took a 3 hr nap this afternoon. My knees hurt after grocery shopping which is why i am swollen too. I have a mild headache coming on that hopefully i can sleep off. My stomach is now rumbling. If its not Celiac what else can this be? Im anxious for answers. Thank you

[MitziG]

Your symptoms are classic signs of inflammation. Inflammation is caused/worsened by what you eat. This was news to me! Being dx with celiac completely changed the way I viewed food.

I spent many years with chronic fatigue, anemia, unexplained weight gain that no amount of diet or exercise would budge. Every part of my body hurt. My face was covered in acne. My scalp crusted, scabbed, oozed, itched and burned, despite the strongest shampoos I could buy.

I passed gas all day long, and I thought having to unbutton your pants after a meal was normal, cuz everyone in my family did it. Sometimes I had diarrhea, sometimes I was constipated. Sometimes things worked just fine.

My tongue was frequently covered in canker sores that would even spread down my throat. I went to several doctors for help because it was too painful even to talk. They gave me chemical mouthwashes and sent me on my way.

I developed interstitial cystitis, and began having to pee 40-50 times a day. The pain was unbearable.

My entire life I was sick with every bug that came around. I never went a month without catching something.

My brain just stopped working. I began mixing up words, forgetting things I knew I knew, and having trouble with simple tasks. I left burners on, left groceries at the store and left my children at school.

I laid awake for hours trying to sleep. When morning came, I felt drugged and could hardly get out of bed. For 30 years.

Eventually the fatigue got so bad I could hardly lift my arms and legs- finally, they dx anemia then.

I went from dr to dr, looking for answers. I was given antidepressants, and adderall. 60 mg of adderall and I still was sleeping 16 hrs a day, and totally exhausted.

And then my little boy got sick. 2 years of unexplained stomach pain that was so bad he wanted to die. He became suicidal and severely depressed. He started having panic attacks and wouldn't leave the house.

During an exploratory endoscopy, they found celiac. An endoscopy that only happened because I demanded they find the reason for his stomach pain, even though they insisted that he was fine.

So then, the rest of us got tested and scoped. And my daughter and I both had celiac as well.

Best day of my life.

I'm healthy now. I don't get sick at all. I wake up at 6am on my own and bounce out of bed. Nothing hurts. I take no meds anymore.

Giving up gluten was the catalyst for discovering what food can do to the body. I felt better, but I wanted more. I gave up all dairy, anything with milk protein. My face cleared up. The weight finally started falling off. My intestines were protesting though. So I am now a few days into a paleo diet- no sugar, no grains, no legumes. No inflammatory foods.

I am pretty sure I could leap tall buildings today.

Your answer likely lies with food. You may or may not have celiac. Ceetainly, get the tests done. Be sure to get the full panel, you can find the list on this website. It is a rare dr who will actually do the full panel on their own.

Be prepared to hear that you are too fat to be celiac. Ignore that and make him test you anyway.

Be prepared for it to be negative. The blood tests only identify 70% of celiacs anyway.

Then, be your own dr. Walk away from gluten and never look back. It is probably the worst offender when it comes to inflammatory foods.

You can get better. Your life can change.

Mine did, and so have the lives of many others.

[MrsAcE]

Your symptoms are classic signs of inflammation. Inflammation is caused/worsened by what you eat. This was news to me! Being dx with celiac completely changed the way I viewed food.

I spent many years with chronic fatigue, anemia, unexplained weight gain that no amount of diet or exercise would budge. Every part of my body hurt. My face was covered in acne. My scalp crusted, scabbed, oozed, itched and burned, despite the strongest shampoos I could buy.

I passed gas all day long, and I thought having to unbutton your pants after a meal was normal, cuz everyone in my family did it. Sometimes I had diarrhea, sometimes I was constipated. Sometimes things worked just fine.

My tongue was frequently covered in canker sores that would even spread down my throat. I went to several doctors for help because it was too painful even to talk. They gave me chemical mouthwashes and sent me on my way.

I developed interstitial cystitis, and began having to pee 40-50 times a day. The pain was unbearable.

My entire life I was sick with every bug that came around. I never went a month without catching something.

My brain just stopped working. I began mixing up words, forgetting things I knew I knew, and having trouble with simple tasks. I left burners on, left groceries at the store and left my children at school.

I laid awake for hours trying to sleep. When morning came, I felt drugged and could hardly get out of bed. For 30 years.

Eventually the fatigue got so bad I could hardly lift my arms and legs- finally, they dx anemia then.

I went from dr to dr, looking for answers. I was given antidepressants, and adderall. 60 mg of adderall and I still was sleeping 16 hrs a day, and totally exhausted.

And then my little boy got sick. 2 years of unexplained stomach pain that was so bad he wanted to die. He became suicidal and severely depressed. He started having panic attacks and wouldn't leave the house.

During an exploratory endoscopy, they found celiac. An endoscopy that only happened because I demanded they find the reason for his stomach pain, even though they insisted that he was fine.

So then, the rest of us got tested and scoped. And my daughter and I both had celiac as well.

Best day of my life.

I'm healthy now. I don't get sick at all. I wake up at 6am on my own and bounce out of bed. Nothing hurts. I take no meds anymore.

Giving up gluten was the catalyst for discovering what food can do to the body. I felt better, but I wanted more. I gave up all dairy, anything with milk protein. My face cleared up. The weight finally started falling off. My intestines were protesting though. So I am now a few days into a paleo diet- no sugar, no grains, no legumes. No inflammatory foods.

I am pretty sure I could leap tall buildings today.

Your answer likely lies with food. You may or may not have celiac. Ceetainly, get the tests done. Be sure to get the full panel, you can find the list on this website. It is a rare dr who will actually do the full panel on their own.

Be prepared to hear that you are too fat to be celiac. Ignore that and make him test you anyway.

Be prepared for it to be negative. The blood tests only identify 70% of celiacs anyway.

Then, be your own dr. Walk away from gluten and never look back. It is probably the worst offender when it comes to inflammatory foods.

You can get better. Your life can change.

Mine did, and so have the lives of many others.

Wow!! My 3 girls ages 5,8,&10 have all shown symptoms as well which of course we have been given every other excuse or cause. My 10 yr old was diagnosed with migraines at age 7 and now take a preventative, she has had stomach issues constipation and stomach pains so bad all she did was lay there and cry dr prescribed laxatives. My 8 yr old has had multiple tests done due to her frequent urination and have found nothing, and she has behavioral issues. My 5 yr old has cried over leg pain since she was a year old, nights where we have been up all night rubbing her legs while she screams. Dr has told us = growing pains all kids are different. She also gets these stomach pains that leaves her crying not wanting anything but to curl in a ball, constipation and loss stool are constant issues for her. I have never thought of putting it all together I wont lie sometimes I thought the girls were being dramatic and unable to deal with pains =[

After i get tested either way i think gluten must go! This forum has really opened my eyes to a disease and food allergies I did not know exsisted.

[MitziG]

Eye opening it is! Your kids' symptoms are very typical of celiac kids! The whole "growing pains" garbage that doctors spout off- growing DOESN'T hurt! Get the kids tested pronto, and after testing, ditch the gluten! If you can get a dx for them, great. It will help with staying committed to the diet and not giving in to occasional "cheats." If you have celiac, then cheating is just not an option. Ever. So it is a big deal, and easier to stand firm when you have a for sure dx.

My dd had migraines from age 5 to 12, when she was dx celiac. No more migraines! My son was severely constipated as a BREASTFED infant! He was on laxatives for 3 years, then on acid reflux meds for 3 more years. He screamed nonstop for three years it seemed. Many behavioral issues, the majority of which have resolved off gluten. My daughter just spent a lot. Of time in the bathroom, but nothing severe. She had bad eczema though, the migraines, and a tummy that always stuck out so far we jokingly called it her "buddha belly" now her skin is clear, her belly is flat and her headaches are history!

Me, I'm a new woman. And like you, I never knew of this world of food sensitivities, but boy have my eyes been opened since! You came to the right place!

[MitziG]

Oh, forgot to add, before dx, my son was peeing literally every 10 minutes. He also complained about numbness and tingling in his feet. I suspected diabetes and had him checked- he was borderline high, but dr blew it off. After going gluten-free, not only did the peeing stop, the numbness went away and his blood sugar dropped from 103 to 79!

[GFinDC]

HI,

It sounds like you are in the right place. Do get all the testing you want done before going gluten-free. The tests are usually not any good after being gluten-free a while. The testes are usually a blood antibody test panel first, and then an endoscopy with 5 or more biopsy samples. None of these tests are reuired to eat a gluten-free diet though. Reasons for testing are:

Possible participation in clinical trials (most require positive endoscopy results).

Possible help by the school systems for diet restrictions under the ADA law.. May be easier to get help, may not matter too. Some schools may not need anything more than parent's word on it.

A possible tax break on gluten-free food, (not really a good idea to do , doesn't work out for most people.)

Possibly more incentive to stay on the gluten-free diet.

Reasons not to get diagnosed:

Could be bad for medical insurance coverage.

Could affect employment opportunities.

May require a gluten challenge for 3 months of eating gluten and damaging your health to get tested.

So just some things to think about.

[MrsAcE]

So much to process here! I am more anxious now than anything. I want answers for myself and my daughters. Egzema is another 'symptom' the girls have all suffered from since infancy doctors told us it was related to Hay Fever, Asthma, and the bad allergies the girls suffer from all year long. My oldest and youngest have been sent home from stomach pain and missed 10 days in total this year mostly due to stomach issues and migraines for my oldest!

I want a diagnosis, even if its not Celiac which I feel is the answer after going through the many forum posts here. I know Im not crazy now! Thank you all for the information.

[squirmingitch]

Make sure you & the kids keep eating gluten until ALL testing including endoscopy are completed. Even going off gluten or going gluten light for a week beforehand can skew the tests & you want the best chance possible. There are false negatives but no false positives.

See the FULL celiac panel for blood work on this thread. Also pay particular attention to Skylark's posts there --- she is very knowledgeable.

https://www.celiac.com/forums/topic/93415-weak-positive-ttg-iga/page__p__798953__fromsearch__1#entry798953

And this thread may be helpful to you for info. about your kids:

https://www.celiac.com/forums/topic/90648-conflicting-doctor-advice-regarding-my-4-year-old/

[MrsAcE]

The only symptom none of the girls have is growth issues? My oldest and youngest are the tallest in their classes my middle daughter is average height. They are skinny mini's but I have always assumed thats from their Dads side of the family. Should I wait for my own diagnosis before calling their pediatrician asking for testing?

[MrsAcE]

Tomorrow morning I meet with my doctor I am pretty anxious, he is the doctor that really wiped everything away with "Your Fat, Your Lazy, and Anemia is not an excuse" Ive only seen him twice since he is temporarly replacing my doctor who was great but moved away. I like the office its right next to my house and their hours work for me a new doctor is coming in to replace my old doctor in July.

What is the best approach to my doctor since Ive seen him Ive gained another 30 pounds!! I have NOT been sitting around eating bon-bons and Mcdonalds, I feel ashamed I REALLY cant explain my weight gain. I walk on my lunch breaks even though I end up hurting after and I have shortness of breathe from the shortest walk and a slow pace Ive read more on here about weight loss than weight gain.

[frieze]

The only symptom none of the girls have is growth issues? My oldest and youngest are the tallest in their classes my middle daughter is average height. They are skinny mini's but I have always assumed thats from their Dads side of the family. Should I wait for my own diagnosis before calling their pediatrician asking for testing?

NO...

[frieze]

Tomorrow morning I meet with my doctor I am pretty anxious, he is the doctor that really wiped everything away with "Your Fat, Your Lazy, and Anemia is not an excuse" Ive only seen him twice since he is temporarly replacing my doctor who was great but moved away. I like the office its right next to my house and their hours work for me a new doctor is coming in to replace my old doctor in July.

What is the best approach to my doctor since Ive seen him Ive gained another 30 pounds!! I have NOT been sitting around eating bon-bons and Mcdonalds, I feel ashamed I REALLY cant explain my weight gain. I walk on my lunch breaks even though I end up hurting after and I have shortness of breathe from the shortest walk and a slow pace Ive read more on here about weight loss than weight gain.

You need to be firm. Calling you fat and lazy is not acceptable. and anemia is certainly a reason for having lower endurance! Perhaps he needs a refresher in pathophys? Sounds like the typical macho idiot. remember, he works for YOU! If he won't do the testing you want, tell him calmly, but firmly, you want it written in you chart that you requested it, and his reasons for declining. then get a copy of what he has written, with his signature.

[MrsAcE]

You need to be firm. Calling you fat and lazy is not acceptable. and anemia is certainly a reason for having lower endurance! Perhaps he needs a refresher in pathophys? Sounds like the typical macho idiot. remember, he works for YOU! If he won't do the testing you want, tell him calmly, but firmly, you want it written in you chart that you requested it, and his reasons for declining. then get a copy of what he has written, with his signature.

I am going to be firm, I am ready to go. I am making myself queasy from anxiety! Ive already called my pediatrician who Im waiting for a call back to schedule an appointment I have no problem with being proactive with my daughters.

[MrsAcE]

With all the above symptoms including mild scoliosis since childhood, and confirmed by my chiropractor(I read about this on another forum here) Is there anything else this could be? Is Gluten Intolerance as bad a Celiac(symptom wise). Im second guessing myself out of nervousness. I wish there was a clear sign like one symptom across the board. Im trying to stay calm.

[GFinDC]

You can find a different doctor right? I suppose he at least checked your thyroid levels and tested for Hashimoto's too? Weight gain is associated with low thryoid levels and can be a symptom of celiac also. If you have celiac eventually you would probably start losing weight when your gut is too damaged to absorb food, but you might die getting there too. Some people get hungry for while after going gluten-free and then taper off and end up eating less than they used to before gluten-free and not being hungry. Being low on essential vitamins and minerals can cause cravings. After being gluten-free a while and healing the gut you can start absorbing the viamtins and minerals you need and the cravings can go away. I eat much less than I used to before gluten-free, and am not nearly as hungry as I used to be.

Gluten intolerance can have serious symptoms also. Some people think it is celiac that hasn't reached the level of detectability with current medical tests. Lots of people have symptoms for man years before they are finally diagnosed. Doctors aren't really too good at diagnosing celiac yet. They have a ways to go.

[MrsAcE]

You can find a different doctor right? I suppose he at least checked your thyroid levels and tested for Hashimoto's too? Weight gain is associated with low thryoid levels and can be a symptom of celiac also. If you have celiac eventually you would probably start losing weight when your gut is too damaged to absorb food, but you might die getting there too. Some people get hungry for while after going gluten-free and then taper off and end up eating less than they used to before gluten-free and not being hungry. Being low on essential vitamins and minerals can cause cravings. After being gluten-free a while and healing the gut you can start absorbing the viamtins and minerals you need and the cravings can go away. I eat much less than I used to before gluten-free, and am not nearly as hungry as I used to be.

Gluten intolerance can have serious symptoms also. Some people think it is celiac that hasn't reached the level of detectability with current medical tests. Lots of people have symptoms for man years before they are finally diagnosed. Doctors aren't really too good at diagnosing celiac yet. They have a ways to go.

The new doctor that is replacing my old doctor starts in July. My old doctor tested my thyroid and she was convinced that was my problem and my thyroid levels were normal. Hasimoto has not been tested, ill google that now. My old doctor was taking steps into finding out if i had Menaires Disease, but since Ive taken my iron pills my vertigo is less frequent. My vertigo can be on a scale of 1-10 a 10 i get clamy/sweaty i cant move nauseous and its horrible. Again it does not happen often anymore.

After a blood panel how long does it usually take for answers?

[MitziG]

Well, I am 5' 10" (used to be 5' 11" but got squished by a horse and fused two vertebrae) so growth is not necessarily the big clue! (Tho I was short until high school, go figure)

As for gluten intolerance, I think it some cases the symptoms are more pronounced than celiac. Celiac just gets the recognition of being a "disease"

Oooo. Scary....

Do you have the list of tests for your dr tomorrow? Because I can bet you he WON'T be doing all of them unless you insist, and it is important that you have them ALL!

As for the kids- why wait? If your test is negative, that will just give the dr a reason to try and talk you out of testing them.

I know you really want this to be your answer- but please prepare yourself for a negative test. The tests just are not great at catching celiac- they miss at least 30% or celiacs! I would hate for you to get a negative and be discouraged. I am pretty confident that gluten is a problem not just for you, but for most of mankind! Once ALL the testing is done, just get rid of the stuff and you will be shocked by how much better you feel. But beware, it is not a "quick fix" for many people. For me it took 6 mos before I even noticed a difference- but now, 14 mos later- WOWIE! I feel great! I wish that for EVERYBODY! Hang in there and be strong with your doctor tomorrow. He is just the guy you pay to sign the test orders- you owe him no explanations, no apolgies- nothing but money!

[GFinDC]

The new doctor that is replacing my old doctor starts in July. My old doctor tested my thyroid and she was convinced that was my problem and my thyroid levels were normal. Hasimoto has not been tested, ill google that now. My old doctor was taking steps into finding out if i had Menaires Disease, but since Ive taken my iron pills my vertigo is less frequent. My vertigo can be on a scale of 1-10 a 10 i get clamy/sweaty i cant move nauseous and its horrible. Again it does not happen often anymore.

After a blood panel how long does it usually take for answers?

Results can take a couple weeks. It might go faster sometimes. Your doc should be able to tell you when they expect the results from the lab.

Hashimoto's thryroiditis is an autoimmune disease also. The antibodies attack the thyroid. Hashimoto's is more common in celiacs, and more frequent in women.

[MrsAcE]

Okay my doctors appointment went better than expected doctor agreed I show many symptoms of Celiac and could not ignore it so I did the blood panel in their office. I am also scheduled with a GI June 26th. I called my pediatrician that day and she called in blood tests for my oldest and youngest she was unsure of my middle child. So 3 of us had our testing and we anxiously await an answer We are not gluten free yet I am going to wait to hear from the blood test, but I do plan on going Gluten Free as soon as tests are out of the way. I have atleast a month or so to prepare. Thank you all for your words of wisdom. I have been lurking this forum all week and finding so much useful information.

[MrsAcE]

Also my Thyroid is normal, my blood sugar levels are normal, my blood pressure was normal this time it has been very low, and my Anemia is doing GREAT I am considered normal now 12.5!!! It was a 6.5 a year ago!

[squirmingitch]

Good for you! Be sure to get a copy of everyone's tests & post them here with their ref. ranges. And the GI may wish to do an endoscopy so continue with eating gluten until that's done.

Great news on the anemia!

A month gives you time to prepare. Continue to read & ask questions on this board. Get your printer ready to print off lists which will make grocery shopping easier.

[MrsAcE]

I received a msg from my pediatricians nurse some of the results are in and so far both girls(oldest and youngest) are negative, nurse said not all results are in yet. Their office is obviously quicker than my own.

[roxieb73]

All I can say is WOW your symptoms almost mirror mine and so do the kids!!! My son has had stomach aches and growing pains his whole life. He also has bad tooth enamel and white poo. I am currently in the process of getting tested if positive then it is his turn.

What were the numbers and ranges?????????? I can't believe they were negative. Maybe false negatives?

[MitziG]

Remember, I told you to prepare for it to be negative. It may be a false negative, or you may be gluten intolerant. It would be so much easier if everyone who had a problemm with gluten tested positive for Celiac Disease because then the facts are indisputable. But...on the upside, this means your kids PROBABLY don't have an auto-immune disease, and that IS a good thing. Hang in there for the testing to be done, and then put all of you on a serious gluten free diet. You will most definitely see changes, whether it resolves all the symptoms or not. But you will have to be 100% compliant- no cheats- if you really want to find out if this is the problem. I strongly recommend you read the book Dangerous Grains. It will change the way you view gluten forever!

[MrsAcE]

All I can say is WOW your symptoms almost mirror mine and so do the kids!!! My son has had stomach aches and growing pains his whole life. He also has bad tooth enamel and white poo. I am currently in the process of getting tested if positive then it is his turn.

What were the numbers and ranges?????????? I can't believe they were negative. Maybe false negatives?

The childrens results are coming in the mail then I can share the numbers. I was surprised!! I'll ask for additional testing.

Remember, I told you to prepare for it to be negative. It may be a false negative, or you may be gluten intolerant. It would be so much easier if everyone who had a problemm with gluten tested positive for Celiac Disease because then the facts are indisputable. But...on the upside, this means your kids PROBABLY don't have an auto-immune disease, and that IS a good thing. Hang in there for the testing to be done, and then put all of you on a serious gluten free diet. You will most definitely see changes, whether it resolves all the symptoms or not. But you will have to be 100% compliant- no cheats- if you really want to find out if this is the problem. I strongly recommend you read the book Dangerous Grains. It will change the way you view gluten forever!

I was prepared for a negative. I am still anxious for mine I called my doctors office and was told they have results but the nurse has to call me. With 2 of my girls testing negative it really leaves me up in the air, no answer to my 5 yr olds leg pains that hits her every few months. If my blood test come back negative as well, should I wait til my G.I. appointment on the 26th of this month before going gluten free?