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GhostLady

Desperately Seeking Opinions And Advice

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Hello everyone,

I have been reading this forum for about 3 weeks but this is my first post. I want to apologize in advance for the length of this post but I have been suffering for a long time and I want to make sure I include as much info as possible so maybe someone can help me.

Here's my story:

I am now 35 yrs. old. I started having GI symptoms when I was 20. It started right after my 1st child was born. (Before I go any further I wanted to mention that I have also had headaches since I was a small child. The Drs. were unable to figure out the cause and ended up telling my parents that my headaches were somehow caused by the sun even though I would have them without even being in the sun. I also had anxiety/depression and behavioral issues during my childhood/teenage yrs. )

Back to my GI symptoms: It started with abdominal pain located right under my ribs/sterum area in the center. I also occasionally have pain in both sides of my upper abdomen. The pain would sometimes be so severe that I would curl into a ball on the floor unable to move. I went to the ER several times and they would just give me something for pain (which did nothing) and send me home. I was also very tired and weak all the time. I didn't go to a Dr. for a few yrs. because I didn't have insurance and I didn't have symptoms very often.

I got pregnant with my second child about 1 1/2 yrs later. I didn't have a lot of pain during the pregnancy but I did have morning (all day) sickness for over half of the pregnancy. My OB Dr. even put me on meds. for nausea but it didn't help at all. After my son was born, the abdominal pain came back more often than before and I was even more tired. I couldn't even hold down a job because I was so tired all the time. I went to a Dr. about being so tired and he told me that it was due to my weight. I wasn't extremely overweight but he said that because I had been thin before both of my pregnancies, my body wasn't used to carrying around the extra weight and it was making me tired. I asked him why I was more tired after the 2nd pregnancy even though I had gained more weight with the 1st one but he didn't really give me an answer other than to lose the weight and see if I felt better.

My symptoms continued to get worse even when I had lost some weight. I started to notice that the pain seemed to be worse when I would eat. I also started to have occasional diarrhea even though most of my life I had been constipated. All of my symptoms continued to get worse and more frequent for the next 7 yrs. I felt too weak and tired to work or play with my kids. Most of those years I spent working as an EMT for a small private ambulance service so I thought maybe I was just tired because of my job. I worked a lot of 24 hr shifts so I didn't get a lot of uninterrupted sleep. I still didn't have insurance so I just tried to ignore the symptoms. The abdominal pain did seem to get better if I would eat something light or take an antacid so I thought maybe I just had ulcers.

In 2001 I got pregnant with my 3rd child. For some reason I felt better during that pregnancy. I did have some nausea but not as bad as before. I very rarely had abdominal pain. I was a little tired but I was still working a lot and being pregnant I expected to be tired. After that child was born my symptoms seems to go into overdrive. The abdominal pain was almost daily. I would alternate between diarrhea and constipation and my anxiety and depression got a lot worse. I even started to have chest pain which scared me enough to go to a Dr. This Dr. seemed to be very caring at first and started doing tests. He did several blood tests (no celiac test) and EKG's etc.. He then referred me to a surgeon because he thought it could be my gall bladder. The surgeon did an endosocopy (again no celiac test) and found that I had several ulcers. After taking the meds. for that I didn't feel any better. He did another endosocopy and the ulcers had healed but I still had all of the same symptoms. He did several tests on my gall bladder and they all were negative. He suggested removing my gall bladder anyway to see if my symptoms would improve. After removing my gall bladder he said that I did have beginning stage gall bladder disease but he didn't think it was severe enough to cause my symptoms. He was right because they didn't improve and my diarrhea became worse.

The surgeon was out of ideas so he sent me back to my GP who finally decided that all of my symptoms were due to stress and anxiety. He told me to cut out/reduce caffeine, try to reduce my stress, and gave me a prescription for Zoloft and nexium and that was it. I again decided that this was just something that I would have to live with (or try to live with) and gave up on Drs. again.

In 2005 I got pregnant with my 4th child. This is when things got a lot worse. By that time, I was remarried to a wonderful man and was not working so I had very little stress. My husband and I were both thrilled about the pregnancy because this was his first child. He was a great step father to my other 3 children but had always wanted to have one of his own. Our excitement was short lived though after I became so sick that most days I couldn't even get out of bed. I was sick 24 hrs a day and could barley eat anything. I also started having diarrhea on a daily basis. I couldn't even take care of my other kids. I went to my OB dr. several times and after trying many different suggestions to relieve the nausea, he finally put me on phenergan which made me feel worse. He also wanted to test a stool sample to try and find the cause of the diarrhea. About half way through the pregnancy he put me on Zofran (nausea med given to cancer pts.) which did help some. I still felt sick most of the time but I was able to function and at least eat something. I spent the rest of my pregnancy living on mostly raw veggies so I'm not sure if the Zofran helped or my diet. He never did test a stool sample because the Zofran seemed to help the diarrhea too. I also had a lot of pain during the pregnancy but managed to carry the baby to term and had a healthy baby boy.

I couldn't wait for my son to be born so I could get rid of the nausea but that didn't happen. As soon as I got home from the hospital it hit again and I vomited the first "real" meal I'd had in months. The nausea has been with me ever since ( my son will be two next weekend). Almost every time I eat. I also still have the diarrhea almost every time I eat. TMI WARNING: The diarrhea has now become yellow/orange, foul smelling, and very fatty/oily. I still have all of the other symptoms too. Over the last few years I have also been having "dizzy spells". They usually just lasted for a few minutes but about a months ago, I became dizzy and it just hasn't went away. It's not a spinning dizzy, more like the brain fog. I do feel kind of off balance though. This has been constant for over a month. Some days I can't even lift my head up and other days I am able to function but the feeling is always there to some degree. I have also noticed that the anxiety is much, much worse when I am feeling like this.

A few weeks ago I went to a nurse practitioner that my husband goes to and she dx me with labrynthitis although she didn't seem to sure about it. She gave me a med for the dizziness/nausea and also prednisone. The dizziness/nausea med did help a little with the nausea but didn't do anything for the dizziness. It also made me so tired that I couldn't function anyway so I felt better without it. The prednisone made me almost vomit and I wasn't even able to take full dose. My husband called her and she told me to forget the prednisone and just take the other as often as I could. I looked up the symptoms of labrynthitis online and it looks like most people have ringing in the ears and/or rapid eye movement with it and I don't have either of those.

I finally just started typing my main symptoms into the search engine and every page that popped up was about Celiac. I emailed a lady who runs a local celiac support group to see if she could recommend a Dr. and she did but it will be a month or two before I can see him. His office has a walk-in clinic so I went there on Monday so I could at least get the blood test done while I waited to see the Dr. that she recommended.

The Dr. that I saw there didn't seem to take me very seriously and thought that I might be lactose intolerant. She did order the celiac blood test though along with a few other blood tests. Yesterday, she left me a message saying "all of your tests were OK" and to call back if I had any questions. She didn't even tell me to come in for a follow up or suggest any other tests or anything. I called the office about an hour after she left the message but she was already gone for the day. The lady who answered the phone said she would find my blood test results and have a nurse call me back right away but no one ever called back. I just sat and cried after I got her message. I thought I had finally found the cause of all of my problems and to get a negative result was just devastating.

I know there are a lot of false negatives so I am not convinced but it was still hard to hear. I am going to the office today to get a copy of the results and I will post them later but I would just like to get some opinions and advice.

Does anyone know of anything other than Celiac that could explain my symptoms? I did also tell her I would like to have tests for thyroid, liver and pancreas but I'm not sure if she did them. She said all of the tests were OK. I am going to make an appt with the other Dr. and have my results sent to him. I am also going to request a biopsy.

Does anyone have any other advice? I would like to have all of the testing done before I try to go gluten-free. I know that would probably be the easiest way to find out for sure but I would really like to have the actual dx. There are several reason but the main one is my kids. All three of my boys have some of the symptoms and if I have a positive test I want to make sure they get tested. They have a great pediatrician but he is a little "old school" and I'm afraid he will be reluctant to test them unless I can show him my positive result. I would also like to have the support of my family and I know some (mainly my parents) wouldn't support my decision to go gluten-free without a dx.

Any ideas, suggestions, opinions, or advice would be greatly appreciated.

One more question: For at least a year I have only been eating one meal a day before I go to bed (afraid to eat during the day because I will be too sick to get anything done). Most of the time my one meal does contain gluten but is it possible that by only eating once a day that I might not be getting enough gluten to make the blood test show positive?

Again, I'm sorry this is such a long post but it's hard to fit 15 years into a few short sentences.

In case anyone had trouble following this long boring story, here is a simple list of my symptoms including some that I didn't include above:

Dizziness/brain fog (daily for at least a month)

Nausea (daily)

Diarrhea (daily)

Abdominal pain

Chest pain

Anxiety (worse during brain fog) (daily)

depression

tired (daily)

weakness

muscle pain/stiffness

chest pain (occasional)

Headaches (daily)

insomnia (daily)

restless

dental problems

weight loss

frequent sinus problems

cold chills (sometimes with very low body temp)

hot flashes

tingling in legs and arms (kind of like bugs are crawling on me)

trouble concentrating (daily)

memory loss

loss of appetite (daily)

bloating/gas (daily)

trouble swallowing (this one has improved some)

trouble seeing at night (only seems to happen when I'm driving)

heavier and more painful periods (this just started a few months ago)

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Your right it was long and the text was so tiny I couldn't read it all, next time for us middle aged folks use some paragraphs to break it up!

I'm not sure what to tell you and I hope other will have better advice. You certainly have the symptoms of celiac (albeit they could be symptoms of other things as well).

I first got my symptoms after I had my daughter as well. I trekked back and forth to doctors for 11 years. I was told all sorts of things, chronic fatigue, IBS, lactose intolerant. I kept getting worse and worse. My Dr. at that ran some more tests and he mentioned in the office the names of them. The only one that stuck in my head was Celiac and I had never heard of it.

I went home and googled it and couldn't believe what I read. That very day I had the blood test for it I went gluten free. The Dr. called me a week later and told me the test was negative. I was stunned because for the first time in 11 years I did not have stomach pain or the runs. I told him this and he said, "Its all in your head". (wrong end buster!).

I changed doctors, continued to be gluten-free and paid for the entrolab testing for Celiac. It came back positive (and my DNA was the strongest for Celiac) and I was sold. My new doctor sent me to a GI doctor and by the time I got in to see her she said I had been gluten-free for too long for an accurate blood test and /or biopsy. But she said you did the golden test, you went gluten free and got better, thats the test that counts. However, when she looked up the blood tests my previous doctor had run (1 single test) she told me it has not been used to test for Celiac for some time and the results of it are not valid.

I've been gluten-free for 6 years and feel great. Interestingly my 16 year old daughter was tested for Celiac last year and she turned up positive - no big surprise. But to me it confirms the fact that my first doctor was a jerk.

I didn't need a strict medical diagnosis and I'm glad after 11 years of feeling terrible I didn't wait for one. I guess some people need one to "stick" to the diet but I felt so good, so fast after going gluten-free that I have never once cheated (I've been accidentally glutened but I've never intentionally eaten it). If you need one and don't want to pay for private testing then its time you find some doctors that will do the sort of testing you need. I'm not sure where you are from but I'm sure there are people on this list that can help you find some good celiac friendly doctors in your area. Also I'm not sure 1 meal a day is enough gluten but others may know more about that.

Good luck, Susan

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I also want to point out that you can experiment w being gluten-free without making a huge investment - mashed potatoes or french fries and meat and veggies and fruit . . . all gluten free. However, as bad as you've been for as long as you've been bad, you will probably have other food intolerances too

One thing I picked up along the way here, somehow, was that during pregnancy, your immune system is lowered, so that you dont reject the baby, so sometimes symptoms are milder during pregnancy. My first pregnancy was the hardest for me, morning sickness wise, but part of that was the prenatal vitamins, which made me feel awful.

There are tests for sensitivities and genes that you can pay for yourself, or you can wait for the apt w the GI specailist . . .or you can do a quick experiment by eating gluten-free for 2 weeks and see if you feel better. As sick as you've been, I cant imagine anyone protesting that its all in your head, if you see improvement. Well, sure, some doctors will . .. but your family should be able to see the difference.

I really hope you find something soon! Oh, and the oily floating stuff means malabsorption - make sure ur doctor knows this.


Cara - 42, mom to dd 15, ds 12, ds 4

Off gluten and dairy (and tapioca ;-( ) since 11/07

A.L.C.A.T. test showed over 50 sensitive foods

Celiac panel came back negative.

Regular allergy testing reacted to every inhalant and all but 6 foods.

Slowly adding in foods, started w 19 and now have 25

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If you are only eating one meal a day that may or may not contain gluten, it is going to be harder for you to get positive results on the bloodwork. Please do get copies of your bloodwork results from the doctor and post them here. Sometimes ill informed doctors run the wrong tests and don't know how to interpret the results they do run.

I can tell from your writing that you are very sick. I have been that sick before, so I feel your pain. All the symptoms you describe could be related to celiac and/or other food intolerances. They could also be related to other things as well. If I were in your shoes and was unable to get bloodwork/biopsy results, my next step would be to try a totally gluten-free diet for a while - a few months at least. Dietary results is a form of diagnosis in itself. If you do see results that way, you may very well have your answer. If it doesn't help, you are not out anything and you can move on to the next possibility.

I know you are concerned about your kids and their symptoms. But you can most likely get their pediatricians to test them based on their symptoms and your positive dietary response. Don't try to think too far down the road now about how your extended family may or may not adjust to you or your kids going on a gluten-free diet. Take things one step at a time and try to figure out what is going on with your health. When you get healthier and out from under the brain fog that goes on with chronic illness, you can tackle the rest.

I hope we can help you. Please keep us updated on how you are doing.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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We are rooting for you. I agree with cruel shoes, post your results up here when you get them. Make sure you get what the normal ranges of the tests were. also see if they tested for your Total IgA levels. Many people don't score high on their bloodtests but still have positive biopsies. I was already gluten free when I read up on all the tests. There was no way I was going back on it, it is OBVIOUS it is horribly bad for me. I went through enterolab so I didn't have to eat it. My daughter is still on gluten, but started showing some symptoms so I took her in for the blood test and am waiting for the results.

After all your testing and such is done and if it comes up negative, I would go gluten free to see. I know what it is like to be sick with kids. You deserve to be the best mother you can be. Good luck and take care.


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

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Hello Everyone,

Thank you so much for your replies and your concern!!!

I think I may have found the problem with my blood work. I picked up the results yesterday and they only did one test for Celiac instead of the whole panel. There were 4 pages total but only one for Celiac.

Here are the results:

Page 1: CBC--All within normal range

Page 2: Complete Metabolic-- All were within normal range except 3 of them were flagged by the lab as being abnormal. (not sure what that means since the Dr. said all of my tests were OK)

GLU-----100 (normal range 51-99)

BUN--- 7.0 (normal range 8.0-20.0)

ALT (SGPT)--- 10 (normal range 14-63)

Page 3: TSH--within normal range (isn't this for Thyroid???)

Page 4: T-Transglutaminase (TTG) IGA--- <1 (normal range 0-3)

Could this be why I tested negative along with the fact that I am only eating once a day?

Do any of the other abnormal results mean anything?

I made an appt. with the other Dr. (the one who is supposed to know a lot about Celiac). I can't get into him until April 30th but they are supposed to call if he has a cancellation. I will try to eat a lot more gluten before that appt.

Again, thank you all for your replies and support!!!

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ah, how frustrating. I hope you can get in sooner than that. Make sure they run the full celiac panel, dont let them convince you otherwise. I hope you get answers soon. Let us know


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

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Have you been checked for autoimmune disease such as Sjogren's or Lupus? That would explain the exhaustion and dizziness. A neuro really should look at the dizziness (*worry*). You can have those autoimmune illness and celiac as well, I have Sjogren's and celiac and chronic pancreatitis. No restrictions to one disease per customer....unfortunately. :(


I don't eat gluten and neither do my cats

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I am so sorry that you are going thru this. If you want an endoscopy I would call the doctor again & see if they can fit you in sooner or get another doctor- ask them if they know anyone...

But, personally I would not waste another day poisoning myself. I would quit eating gluten & get the Enterolab.com tests. Also, you should start taking a sublingual B12 every day immediately, low or no B12 can kill you & you cannot overdose on it - any excess B12 will be excreted thru the urine. So start taking the B12 & work up to about 5,000mcg a day. Sublingual is so that you can absorb it. I am allergic to mannitol, so I do not take a sublingual, I take Nature Made B12 - get it at Walgreens. You can also get the shots at your doctors office.

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Oh, and you said you asked your doc to check your pancreas? Unless you did a three day stool collection and a bunch of imaging studies that you failed to mention, that did not happen. :(

Just checking the amalyase and lipase is pointless, you can have normal ranges and be dying in the middle of the floor (literally)


I don't eat gluten and neither do my cats

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Fedora:

Don't worry. They WILL run the full panel next time. I will make sure of it. If not, my hubby will. I think he's more upset with them than I am. LOL I will keep everyone informed. Just having all of your support is helping already.

Itchygirl:

No, I haven't been checked for either of those as far as I know. I have read some info about lupus and that didn't really seem to fit but I will talk to the Dr. about it just in case. I don't know anything about Sjogren's but I will look it up and ask the doc about it too. The dizziness has me worried too. That's my newest symptom and the one that is scaring me enough to keep pushing the drs. for some type of dx.

Yes, I did ask the Dr. to check my pancreas but she didn't. She said she didn't think it could possibly be my pancreas. Her logic...."if it was your pancreas, your symptoms would be ongoing". I guess she didn't think daily symptoms for 15 years was ongoing. I didn't even try to argue with her. That was the point where I decided that it was hopeless to even try to talk to her. I just wanted to get over to the lab to get my blood work done so I could hurry up and make an appt with the other Dr. She also kept asking me what time of day my dizziness usually starts. I tried several times to explain to her that the dizziness doesn't come and go each day. It has been constant for over a month but I don't think I managed to get that across. I won't be seeing her again...

GFpaperdoll:

I wish I could get in a lot sooner. I have asked everyone I know (and a few that I don't) for Dr. recommendations and they all keep giving me this same Drs. name. I live in a small town and I don't think there are any Drs. here that know anything about Celiac (or anything else for that matter). I am driving to a larger town to see this Dr. He was recommended by 2 ladies who have celiac and who run our local support group. They said he is the best. I guess that's why there is such a long wait to see him. One of the ladies did tell me that there is also a nurse practitioner in the same office who is also very familiar with celiac and he's not as busy so I think I will call Monday to make an appt with him but still keep the one I have in April.

I have been thinking about Enterolab but I'm not sure yet. I have read a little bit about them but I don't feel like I have enough information about them to order the test kit yet. I'm still learning so I might end up going that route especially if I don't have any luck with the Drs. soon.

I tried taking the sublingual B12 a few years ago but I stopped because it didn't seem to be doing much. I will get some more and start taking it again. I'm sure I need it and probably a few other things too since I'm not eating much. Do they sell the sublingual at Walgreens too? I'll try to get over there tomorrow to check it out.

Thank you all for your advice. I will keep you all informed. Keep the great advice coming!!!

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Except that my ataxia began in childhood my story is similar to yours. I am a celiac who does not show up in blood work. That delayed my diagnosis for a very, very long time. I am also going to suggest Enterolab testing and a trial of a strict gluten-free diet, including dropping dairy for a couple of months along with the gluten. Also keep taking that sublingual B12, it does not repair nerves instantly but it will help. The endo, if you choose to do it, is hit and miss and while it can firmly tell you that you are celiac it can not tell you for sure that you are not. The choice is yours whether to wait until they can get you in or to start the diet full force and start healing.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Many times I have seen many of the forum members stating the diet has made no change and what is wrong. Leaky Gut Syndrome causes gluten intolerance and many other intolerances. Infact Celaic disease can cause this. Both of these diagnosis are often not thought of or rejected by Dr.s. In a nut shell, Leaky Gut syndrome is when there is enough damage to the digestive track, that food and liquid particles are leaking directly into the bloodstream. This can cause a host of problems. Your parathyroid could become over active. This is four glands located behind the thyroid gland, which relases a parathormone which triggers calcium to be extracted from bone to balance out the acid levels in blood. If you drink something acidic, it will drive the gland crazy because some of the acid will go directly into the blood stream. Your head and nose could get hard, bones hurt, and urination will become frequent due to the kidneys unloading the calcium. Every effect from Celaiac's disease and then some you could have. You also get a pain in left chest, (non-cardiac related), skin could hurt, cannot take smells and sound and sensation is altered. With this you alsio cannot handle gluten. It will mess you up real bad. Just like many celaic patients, no milk, sugar, canned fruit, caffeine, acidic foods. Actually your diet becomes even more sensitive then with Celiacs disease. It takes roughly 4-6 months to heal with proper diet. You will feel very lousy while you have this due to your immune systems attacks the food particles as they are foreign bodies. There is no magic pill. It is caused by celiac, alcohol, spicy foods, diet in general. Like I said Celiac can cause this, however it is like the chicken and the egg. Which came first? One causes the other, although in Leaky Gut Syndrome, after repair in theory you might be able to go back to gluten, though I feel perhaps being gluten free is a good thing, and in the future, with politics and greed out of the way, they might find out humans and gluten may not be such a good thing. Anyway just wanted to post this to help with those still having problems. There is much more info. I suggest you research this and take the appropriate steps to feel better. Also check for a Parathyroid problem.

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Just a little update:

I have an appointment with the NP on Tuesday. I am going to refuse to leave the office without the complete celiac panel. I'm hoping he will also schedule the biopsy right away.

Either way, I have decided to start the gluten free diet next Saturday, April 5th. I am going to stay on gluten until then so I can try to get all the testing done but if they can't do it that soon I will not wait any longer. This time I am going to make sure I eat a lot of gluten before my appt. just to make sure that my "one meal a day" diet does not cause a false negative.

I have also been keeping a food/symptom log for the last few days. I do seem to have most of my symptoms after eating gluten. The abdominal pain and diarrhea for sure. The nausea doesn't seem to happen every time I eat gluten. It seems to be related to milk. The weird thing is that it only seems to be MILK not all dairy.

Does anyone know why that is or if that's even possible?

I can eat butter/margarine and cheese and I seem to feel ok but if I have even a little bit of milk I get really sick. I'm not sure if this is all milk or just whole milk. We are staying with my parents right now while we are remodeling our house. After I noticed that I might be reacting to milk, I realized that my dad buys whole milk. Before moving in with them all I ever drank or cooked with was 2% and I don't remember ever feeling anything after drinking that. I haven't tried to drink 2% lately so I'm not sure.

Is it possible that I could be reacting to something in the whole milk only???

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re just whole milk - no not likely, it is part of the whole gluten thing.

sounds like your villi are damaged & cannot digest the milk. My guess is that the cheese is just going straight thru you...

but you know that is also common, no one at first can wrap their brain around the fact that such a "healthy" food as bread can be killing you.

sometimes when you eat gluten it seems that all other foods are making you sick, but not the gluten ones, when in reality it is the gluten that is damaging your system... gluten is sneaky that way...

sometimes gluten is all that the person is eating - that used to also be me to an extent. I had tons of food allergies & was actually allergic to barley & oats, but I was eating wheat foods a lot & I was sick a lot also...

Oh & good for you - getting in to see the other medical person - anybody can write an order for the blood tests... let us know how it goes!!!

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gfpaperdoll,

Thank you for your reply. I'm still just trying to figure the whole thing out.

I know gluten is my biggest problem. I get pain and diarrhea (sometimes other symptoms too) every time I eat gluten. I am just not sure if I might have a dairy issue as well. Sometimes I will have nausea with gluten too but it happens every time I have any milk. If I eat or drink something with milk and no gluten I don't have any of the other symptoms except the nausea. It's probably impossible to tell if dairy is causing any symptoms anyway since I am not yet gluten free. The nausea could just be left over from some gluten I've had earlier. I just though maybe there might be something to it since I get nauseous immediately after any milk. I plan to cut out dairy anyway when I go gluten-free until I have time to heal. I don't drink milk anyway. Just use it to cook. Butter and cheese are going to be harder though.

I'll let everyone know how my apt goes Tuesday.

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I would encourage you to do a gluten free dairy free diet and see how it makes you feel for a month. Withdrawls are very possible and sometimes worse than the actual symptoms. You really have nothing to loose. The adjustment takes a couple weeks but the outcome is amazing. Dont give up and no matter what the doctors say, you know your body better and obviosly it is objecting to something in your diet. I could almost promise you it is gluten and dairy. I am not trying to give you false hope I really think trying it out woud be amazing for you. You should pick up the book called dangerous grains, I do not know the author but i am sure you could google it and find it. It really puts in perspective why grains are hurting us. It is writtem by doctors who had a life long struggle of problems and were misdiagnosed there entire lifes. Doctors really dont know everything about our own bodies. Let me know

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krisloner,

Thank you for your reply.

I am definitely going to do the gluten-free diet regardless of what my tests results say. The more I learn, the more convinced I am that gluten is the problem. I am going to start the diet next Saturday no matter what. The only reason I am waiting is because I would really like to get an actual diagnosis but if that isn't possible I will do the diet anyway. I am also going to give up dairy at least for a while.

I hope you are right and the results will be amazing for me. Like most of the people here, I have suffered for too long. I guess I should say 'like all of the people' here because even those who have only had symptoms for a few weeks or months have suffered for too long. When I read through the posts here and think of my own story, I get so angry that so many Drs. out there just keep letting people suffer for so long when the solution is so simple. It just seems like most Drs. don't even care about their patients anymore.

I will try to get the book that you suggested. Unfortunately, we don't have a book store here in my small town but I will try to order it online.

Thanks for your support. I'll let you know how things go.

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