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I Really Dont Know What To Do Anymore! Help?


LuvMoosic4life

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LuvMoosic4life Collaborator

Since I found out that gluten has been causing my problems, I'm really having a hard time getting people to really understand me. Even my mom who works for a GI doctor and knows plenty about medical information, just does not understand what gluten is and how I know it is bothering me. I've explained it in detail many times to her and even printed out information for her to read.

I have yet to see a doctor b/c I need to find one that i can be sure will help me, and actually, I asked my mom to make an appointment for me to see the doctor she works for b/c he does testing for celiac and specializes in GI problems. He is also a primary doctor. ( I figure why call and make an appointment myself when my mom will be the person to answer the phone anyways??) She still has not made an appointment for me and I'm just fed up b/c she doesnt realize how much stress this is putting me through. This doctor really is the best doctor fo rme to see in this area.

I've been gluten free off and on since the end of feb. and experimenting with differant foods. I've tried bringing gluten back in my diet several times, sometimes I have a bad reaction, and other times its not so bad, it just depends on how long I continue eating it for/how much, and what types of food I eat (chinese food for example is horrible, I get bloated and a migrane very soon after I eat it, and often while I am eating it)

I got really sick off of a couple of beers and eggplant type pizza last weekend whenI went out with my friends and couldnt keep anything down for over 12 hours after... I even had one of my friends prepared to take me to the ER b/c it was so bad..... Since then I refuse to even touch gluten. Even after expalaining this to my mom, she still just does not get it, and nobody gets it b/c I'm 22 years old and have been eating bread/pasta...ect my entire life, they say why all of a sudden stop? They dont realize how sick I've become off an on over the past year in college, not to mention the GI problems I've had since high school (my mom has been well aware of, but we just figured it was how I am b/c our whol efamily has the problems).

I live alone and nobody actually see's me get sick. My mom keeps asking me to come over for dinner or to go out for dinner, and I say fine, as long as I can eat gluten-free, I've even offered to cook just to show her you can eat normal foods, its not this horrible thing.... I actually just talked to her on the phone today. I got really upset b/c she doesnt realize how life changing this is (its not a big deal for me to eat gluten-free, I really like the diet, I feel so great!!! its just a big deal b/c people dont understand) So after getting upset on the phone about my health and situation, my mom says "well, come over next weekend when school is over and we will go to the olive garden and have some salad and breadsticks, you can eat that right?"

AHHHHHHHHHH!!!!! I just feel like living somewhere isolated the rest of my life and never going out again. I"ve decide if I ever decide to have a relationship with a guy, they will have to be celiac!!!!! Am I normal for thinking this way or going insane??????? or should I go to counseling??? and now I'm feeling like choosing to be gluten-free for my helath will put a burden on everyone else whenever I am involved in dinner plans, cooking...ect......I cant even imagine trying to tell my itailian grandmother how to cook a meal I can eat, she thought I was insane the last time I was there and got upset that her food made me feel sick, she thought it was her fault b/c her cooking was bad! I explined to her things she could make for me, and she said "thats rediculous!" I've avoided seeing family ever since....


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Jestgar Rising Star

First off, I would call your mom at work and make an appointment just like a regular person. It's hard to remember to do things at work that aren't your normal routine (like make an appointment for someone when they aren't on the phone with you).

Everyone struggles with trying to convince friends and family that this is the new you. Others will have other suggestions, but mine is, if you decide to do this, then don't ever waver (at least in front of people). It's easier for others to take you seriously if you take yourself seriously.

bakingbarb Enthusiast
First off, I would call your mom at work and make an appointment just like a regular person. It's hard to remember to do things at work that aren't your normal routine (like make an appointment for someone when they aren't on the phone with you).

Everyone struggles with trying to convince friends and family that this is the new you. Others will have other suggestions, but mine is, if you decide to do this, then don't ever waver (at least in front of people). It's easier for others to take you seriously if you take yourself seriously.

I second this, especially the wavering part. NEVER EVER waver.

At first I felt like I was a burden to my family and it took a few months for that to change. I think there is a process we go through and if our families don't see us going through it, it is harder for them to understand.

BTW if your whole family has digestion issues then I don't need to tell you they probably have the same as you!!

Give your mom time, because we all needed time to adjust to this ourselves. BUT not all family and friends adjust. I have "friends" that just don't get it and will eat in front of me and let me starve because it isn't their problem. (no they aren't good friends, yes this makes me angry but I have to deal with them at times)

I would suggest you and your mom sit down and you tell her how much this is hurting you. Guilt is a great motivator, use it on her. Tell her how bad it makes you feel that she isn't helping you through this. Don't feel guilty for making her feel guilty.

Rant as much as you need to, we all understand.

Also, I feel so much better eating gluten free that I don't really miss many foods. Its easy, if I miss something I think of the pain I would be in. No thanks.

tarnalberry Community Regular

Don't rely on other people to do the things you need to do - make the appointment yourself. And, though it may take a long time to get to this point, you may have to find acceptance in the fact that you may not find understanding. You don't need understanding from everyone. You need them to respect your decision, but you do not need them to understand it. It would be lovely if a few people could understand - when you find those people (and you will find a few who understand), cherish them - but it will take time, and it may not be the people you want it to be. If nothing else does, this process teaches us to let go of expecting to get what we want, to let go of our expectations of others, and be responsible for ourselves by ourselves.

It may be a long road to get there, and we all start from different places. Give yourself the room to be angry about the path, about the starting place, about any of it. But give yourself the room to grow too. Give other people the time to grow as well. You may have to make this change, and learn it, but the others around you who don't will take all the longer to have any idea of what's going on. Give them even more patience than you give yourself. It will only help you in the long run. :)

sneezydiva Apprentice

I personally would not see the doctor your mother works for, unless you are sure he will still recommend you staying on the gluten-free diet, even if you test negative for celiac. Because chances are you will test negative, and when you do, your mother will see it as irrefutable proof nothing is wrong with you, and she will think you are crazy to stay on the diet, and she will always give you a hard time about it. I would see a different one, and tell her what you want her to know.

I'm thankful everyday for the miracle of testing allergic to wheat and for my allergist telling me, "It would be wise for you to avoid all gluten grains." My mom is a nurse, and would not have believed I needed to be on the diet otherwise. Even now, she thinks I'm too strict, telling me it would be okay to eat it once in awhile.

LuvMoosic4life Collaborator

thanks so much! all of this advice is very encouraging!

I'm definitly going to call myself , the only reason I want my mom to schedule it is b/c she can get me in sooner, she's not the only person who answers the phones there, so I have to be sure I call when I know I can talk to her. Since I am a new pacient the wait is longer to get in for an appt.. Every other place around here that takes my insurance has up to a 2-6 month wait to see a doctor!!!! I havent had a real doctor since my childhood, I've been seeing physicians assistants since then who have never been able to help me with my digestive issues, or give me a good reason for me being sick all of the time!.

I actually also thought that it wouldnt be a good idea to go to the doctor my mom works for, but she doesnt work in that office everyday, I actually am going to request a day when she is not working there and make sure the doctor keeps my information confidential. I really want to see this doctor because I know he is good. My mom says he will spend up to an hour talking to pacients, getting to know them ect ect...and GI and digestive diseases is his specialty..... if I have to go back on wheat to get the tests, I might ...just MIGHT consider it.....We'll see what he says...

I will be staying with my mom often this summer, so maybe she'll begin to understand what I'm going through better...

johnfrancis Newbie

I have a real family history of celiac disease with my grandmother mother and sister all sufferers. We have a great doctor who knows lots about this problem.

There is one thing I will reccomend that you do before going to see your doctor and that is to introduce small amounts of gluten into your diet. This is to ensure that your body is reacting to it and any tests you have will come back positive. I took my daughter for her tests after putting her on a gluten free diet for over a month and everything came bake negative, luckily the doctor picked up on the fact that she had no gluten in her system and rescheduled the tests and told us to give her at least one slice of normal bread a day, or more if she could handle it. Needless to say all the new tests came back positive.

celiac disease is a realtively easy problem to diagnose ifyou have gluten in your system, the main problem comes after diagnosis trying to explain to everyone from family and friends to waiters and chefs what the disease entails.

Good luck and let us know how the appointment goes.

Colm


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pele Rookie
thanks so much! all of this advice is very encouraging!

I'm definitly going to call myself , the only reason I want my mom to schedule it is b/c she can get me in sooner, she's not the only person who answers the phones there, so I have to be sure I call when I know I can talk to her. Since I am a new pacient the wait is longer to get in for an appt.. Every other place around here that takes my insurance has up to a 2-6 month wait to see a doctor!!!! I havent had a real doctor since my childhood, I've been seeing physicians assistants since then who have never been able to help me with my digestive issues, or give me a good reason for me being sick all of the time!.

I actually also thought that it wouldnt be a good idea to go to the doctor my mom works for, but she doesnt work in that office everyday, I actually am going to request a day when she is not working there and make sure the doctor keeps my information confidential. I really want to see this doctor because I know he is good. My mom says he will spend up to an hour talking to pacients, getting to know them ect ect...and GI and digestive diseases is his specialty..... if I have to go back on wheat to get the tests, I might ...just MIGHT consider it.....We'll see what he says...

I will be staying with my mom often this summer, so maybe she'll begin to understand what I'm going through better...

I have to agree with Sneezydiva. See a different doctor for just the reasons she states. Celiac testing is notoriously unreliable with some studies showing blood tests can have 60-70% false negatives. Besides, if you do not have celiac disease the tests will be negative even if you are severely gluten-intolerant. Another thing--even if this doc is a great guy that doesn't mean he knows anything about celiac disease. Some docs are very reluctant to recommend gluten-free diets because they consider it a hardship. And remember, the decision to live gluten-free is yours, not your mom's or the doctor's.

Best wishes to you and be happy that you have figured this out now. Many of us didn't know anything about gluten and kept eating it for decades too long.

debmidge Rising Star
I personally would not see the doctor your mother works for, unless you are sure he will still recommend you staying on the gluten-free diet, even if you test negative for celiac. Because chances are you will test negative, and when you do, your mother will see it as irrefutable proof nothing is wrong with you, and she will think you are crazy to stay on the diet, and she will always give you a hard time about it. I would see a different one, and tell her what you want her to know.

I'm thankful everyday for the miracle of testing allergic to wheat and for my allergist telling me, "It would be wise for you to avoid all gluten grains." My mom is a nurse, and would not have believed I needed to be on the diet otherwise. Even now, she thinks I'm too strict, telling me it would be okay to eat it once in awhile.

Agree with this (idea of seeing doctor your mom works for) ....this could backfire and cause you more grief.

JNBunnie1 Community Regular

Also, remember, even if you get a Celiac diagnosis, a lot of people may not come around anyway. You said that you've felt far better gluten free. If that's enough for YOU to decide stay gluten free, there's no reason to eat gluten and suffer for testing that's intended to convince OTHER people. It's not their choice, it's yours. Not to mention the fact that a positive diagnosis can hurt you later with health and life insurance companies.

ravenwoodglass Mentor

I also agree that you should not see the doc your Mom works for.

Have you asked your GP for a referral to a GI? I would go that route or I would just ask my GP to order the celiac panel. It does not have to be a GI doctor that orders one. The time the doctor spends with his patients and his bedside manner also do not determine how many of us he actually diagnoses. I went to one of the best in my area and got a IBS label and handed antidepresants and told I could take Immodium as many times a day as I need it. I could have been a poster child for celiac at that time with almost every system impacted.

It was my allergist who had to diagnose me. After he did my very genial GI had me do a challenge that almost killed me. He also stated, and this is a direct quote "gee those weren't IBS symptoms, I wish I had known it was that bad". This doctor sat with me more than once and although I thought he was really listening apparently he wasn't.

You could also consider going with Enterolab for stool testing and a gene panel. You would not have to be actively consuming gluten for that as long as you do it soon.

LuvMoosic4life Collaborator
I also agree that you should not see the doc your Mom works for.

Have you asked your GP for a referral to a GI? I would go that route or I would just ask my GP to order the celiac panel. It does not have to be a GI doctor that orders one. The time the doctor spends with his patients and his bedside manner also do not determine how many of us he actually diagnoses. I went to one of the best in my area and got a IBS label and handed antidepresants and told I could take Immodium as many times a day as I need it. I could have been a poster child for celiac at that time with almost every system impacted.

It was my allergist who had to diagnose me. After he did my very genial GI had me do a challenge that almost killed me. He also stated, and this is a direct quote "gee those weren't IBS symptoms, I wish I had known it was that bad". This doctor sat with me more than once and although I thought he was really listening apparently he wasn't.

You could also consider going with Enterolab for stool testing and a gene panel. You would not have to be actively consuming gluten for that as long as you do it soon.

thanks.

I dont have a GP at all, so my main concern is at least getting an appt. b/c I do have other issues (whether or not they are related to Gluten INtolerance I dont know.) I know the amount of time a doc spends with the pacient doesnt matter, but I also know this doc specificly deals with people with celiacs.....which also doesnt mean anything, but at this point I'm starting not to care whether or not I'm diagnosed, I just need adoctor so I dont have to keep going to the ER whenever I get sick, the co-pays really add up. I dont think I will be diagnose with anything like IBS because all of my "IBS" symptoms are gone completly when gluten-free. I do not have to agree to any drug a doc gives me and I most certainly would not allow an antidepresent to enter my mouth. my only problem right now are stomach issues that are very much the side effect of an ulcer, not to mention I didnt get my P this month and have been extremely dizzy and losing wieght, even though I'm eating twice as much...

ravenwoodglass Mentor
thanks.

I dont have a GP at all, so my main concern is at least getting an appt. b/c I do have other issues (whether or not they are related to Gluten INtolerance I dont know.) I know the amount of time a doc spends with the pacient doesnt matter, but I also know this doc specificly deals with people with celiacs.....which also doesnt mean anything, but at this point I'm starting not to care whether or not I'm diagnosed, I just need adoctor so I dont have to keep going to the ER whenever I get sick, the co-pays really add up. I dont think I will be diagnose with anything like IBS because all of my "IBS" symptoms are gone completly when gluten-free. I do not have to agree to any drug a doc gives me and I most certainly would not allow an antidepresent to enter my mouth. my only problem right now are stomach issues that are very much the side effect of an ulcer, not to mention I didnt get my P this month and have been extremely dizzy and losing wieght, even though I'm eating twice as much...

Can you find a GP or an Internist? If you have a number of problems you may want to consider seeing one instead of a GI. The ulcer could also be a result of the gluten, many, including GI doctors don't realize that gluten can do that also. They were my DD's main complaint at her stage of illness. She only had some esionphilictic (sp) changes in the small intestine that the doctor felt were an early stage of celiac. One thing that helped her a great deal, and myself also when I get glutened is pepto bismal, there were no side effects and it does not affect the amount of stomach acid produced so there is no rebound effect from it like you can get when you stop taking drugs that affect the amount of acid produced.

It sounds like you are going to go the gluten free route and I am glad to hear that. An internist could be helpful in assessing your blood levels for different vitamins and minerals. He can also do a pregnancy test to make sure you are not with child, a possibility if you are also feeling dizzy and have been 'active' recently. The dizzyness could be related to gluten if pregnancy is not a possibility. I lived in an off axis world for over 40 years before I was diagnosed.

I hope you feel better soon.

AliB Enthusiast
AHHHHHHHHHH!!!!! I just feel like living somewhere isolated the rest of my life and never going out again. I"ve decide if I ever decide to have a relationship with a guy, they will have to be celiac!!!!!

Now there's a thing - a section for Celiac Dating?????

I dont have a GP at all, so my main concern is at least getting an appt. b/c I do have other issues (whether or not they are related to Gluten INtolerance I dont know.) I know the amount of time a doc spends with the pacient doesnt matter, but I also know this doc specificly deals with people with celiacs.....which also doesnt mean anything, but at this point I'm starting not to care whether or not I'm diagnosed, I just need adoctor so I dont have to keep going to the ER whenever I get sick, the co-pays really add up. I dont think I will be diagnose with anything like IBS because all of my "IBS" symptoms are gone completly when gluten-free. I do not have to agree to any drug a doc gives me and I most certainly would not allow an antidepresent to enter my mouth. my only problem right now are stomach issues that are very much the side effect of an ulcer, not to mention I didnt get my P this month and have been extremely dizzy and losing wieght, even though I'm eating twice as much...

I had the most terrible stomach pain for hours every time I ate - not acid reflux but I am sure I had a hernia. My stomach was crippled, probably with an ulcer or gastritis and the most horrendous gas and bloating all through my gut - the referral process was so slow my doctor hadn't got to the point of sending me for gastroscopy (not that I wanted one anyway!).

After having X-rays, Ultrasound and blood tests that found nothing amiss, I went to my GP and insisted on a Celiac blood test which was done. Immediately I stopped gluten and dairy and within 6 hours the pain was gone. Within a week the bloating and residual discomfort had gone and gradually over the last 3 months other things have started to sort themselves out.

Although my blood test came back negative I have carried on gluten-free anyway as I am so much better for it (I have just asked for a Gene Marker Test so it will be interesting to see what, if anything that throws up). I had IBS for years along with fatigue and weight problems. After not having had a period for nearly a year (I thought I was going through the Menopause!) it started again last month, much to my amazement. After re-adjusting my diet to account for my extreme metabolic 'Protein' type which means more protein and a lot less carbs (I can't and have never been able to cope with carbs very well), my blood pressure has come down to normal so I have been able to drop the meds and I have been able to cut my insulin in half.

Why not get your Mum to sit with you and read through some of the stuff on this Forum so that she can get a better insight into individual health problems and why so many can't cope with gluten. Knowledge is empowering. The more she knows and understands, the more she can help you. Perhaps then she can really help you and support you. It is rare for someone to be having health issues like this on their own - there is very often a family link somewhere. I am sure my Mum was Celiac and I am also very certain my Dad was very gluten intolerant so it is in my family.

Whilst your background seems to be Italian, there may be other genes in the mix that are throwing a spanner in your metabolic typing. A high proportion of traditional italian food is wheat-based carbs - if you are a protein metabolic type then it could be that the traditional diet is actually completely wrong for you and is throwing your body out of balance. It's worth looking into at some point but get the Celiac/GI issues sorted first and then address that later if there are still problems not sorted by the gluten-free diet.

LuvMoosic4life Collaborator
Can you find a GP or an Internist? If you have a number of problems you may want to consider seeing one instead of a GI. The ulcer could also be a result of the gluten, many, including GI doctors don't realize that gluten can do that also. They were my DD's main complaint at her stage of illness. She only had some esionphilictic (sp) changes in the small intestine that the doctor felt were an early stage of celiac. One thing that helped her a great deal, and myself also when I get glutened is pepto bismal, there were no side effects and it does not affect the amount of stomach acid produced so there is no rebound effect from it like you can get when you stop taking drugs that affect the amount of acid produced.

It sounds like you are going to go the gluten free route and I am glad to hear that. An internist could be helpful in assessing your blood levels for different vitamins and minerals. He can also do a pregnancy test to make sure you are not with child, a possibility if you are also feeling dizzy and have been 'active' recently. The dizzyness could be related to gluten if pregnancy is not a possibility. I lived in an off axis world for over 40 years before I was diagnosed.

I hope you feel better soon.

I have an appt. next week with a GP who is also a GI. I'm defintly not pregnant. I have always had dizziness and have a history of anemia, but this dizziness is pretty bad, and it started getting worse when gluten free. I had my cbc done a couple months back and my hemoglobin was bornerline. It will be interested to see what the doc says b/c I"ve always noticed my Gluten symptoms/GI symptoms seemed to be strongly related to my reproductive system. I have also had ammenorhea in the past. I sometime wondered if my GI symptoms were just a result of hormone imbalance, but now that I'm gluten free my symptoms are gone and I still have having hormonal balancce/reproductive problems, which got worse????? wierd...

LuvMoosic4life Collaborator
Now there's a thing - a section for Celiac Dating?????

I had the most terrible stomach pain for hours every time I ate - not acid reflux but I am sure I had a hernia. My stomach was crippled, probably with an ulcer or gastritis and the most horrendous gas and bloating all through my gut - the referral process was so slow my doctor hadn't got to the point of sending me for gastroscopy (not that I wanted one anyway!).

After having X-rays, Ultrasound and blood tests that found nothing amiss, I went to my GP and insisted on a Celiac blood test which was done. Immediately I stopped gluten and dairy and within 6 hours the pain was gone. Within a week the bloating and residual discomfort had gone and gradually over the last 3 months other things have started to sort themselves out.

Although my blood test came back negative I have carried on gluten-free anyway as I am so much better for it (I have just asked for a Gene Marker Test so it will be interesting to see what, if anything that throws up). I had IBS for years along with fatigue and weight problems. After not having had a period for nearly a year (I thought I was going through the Menopause!) it started again last month, much to my amazement. After re-adjusting my diet to account for my extreme metabolic 'Protein' type which means more protein and a lot less carbs (I can't and have never been able to cope with carbs very well), my blood pressure has come down to normal so I have been able to drop the meds and I have been able to cut my insulin in half.

Why not get your Mum to sit with you and read through some of the stuff on this Forum so that she can get a better insight into individual health problems and why so many can't cope with gluten. Knowledge is empowering. The more she knows and understands, the more she can help you. Perhaps then she can really help you and support you. It is rare for someone to be having health issues like this on their own - there is very often a family link somewhere. I am sure my Mum was Celiac and I am also very certain my Dad was very gluten intolerant so it is in my family.

Whilst your background seems to be Italian, there may be other genes in the mix that are throwing a spanner in your metabolic typing. A high proportion of traditional italian food is wheat-based carbs - if you are a protein metabolic type then it could be that the traditional diet is actually completely wrong for you and is throwing your body out of balance. It's worth looking into at some point but get the Celiac/GI issues sorted first and then address that later if there are still problems not sorted by the gluten-free diet.

thanks. glad to hear I'm not the only one with those problems! yes, I want to get my mom to read through this site. only problem is she has dial up where she is---ugh! but I will eventually.

CELIAC DATING! I think that should be a section! :lol::lol:B)

AliB Enthusiast
I have an appt. next week with a GP who is also a GI. I'm defintly not pregnant. I have always had dizziness and have a history of anemia, but this dizziness is pretty bad, and it started getting worse when gluten free. I had my cbc done a couple months back and my hemoglobin was bornerline. It will be interested to see what the doc says b/c I"ve always noticed my Gluten symptoms/GI symptoms seemed to be strongly related to my reproductive system. I have also had ammenorhea in the past. I sometime wondered if my GI symptoms were just a result of hormone imbalance, but now that I'm gluten free my symptoms are gone and I still have having hormonal balancce/reproductive problems, which got worse????? wierd...

Most people find they get a gamut of weird symptoms after going gluten-free. It is quite normal. Apparently gluten acts like an opioid in the brain and the body ends up going through withdrawal symptoms. The gluten also can mask other problems which show up after it is removed, usually due to malabsorption issues.

I had weird symptoms after going gluten-free which seemed to be linked to the thyroid, but I took some kelp tablets for 2 weeks and it sorted itself out. The body gets so used to functioning at half-mast that when the antagonist is removed sometimes the flag drops to the bottom and has to claw its way back up. It's like having a chair pulled away from under you. It was a jolly uncomfortable chair, but at least it propped you up to a certain extent.

It won't happen overnight, but gradually as the gut starts to heal and allow more nutrients to be absorbed, things will start to sort themselves out. I made a list of my health issues, things like the Diabetes and Candida problems, even minor ones like brittle nails and an itchy nose and counted over forty. I would say that between the gluten-free and the change of diet around half of them, some quite major, have either gone or vastly improved. Its a good exercise to do as we forget just how much we have improved to how we were pre gluten-free.

Maybe my energy level hasn't galloped back yet, but the fact that I can run upstairs on a good day is still a fantastic feeling!

By the way, although not definitive, anemia is a classic symptom of Celiac and GI issues.

sneezydiva Apprentice
thanks.

I dont have a GP at all, so my main concern is at least getting an appt. b/c I do have other issues (whether or not they are related to Gluten INtolerance I dont know.) I know the amount of time a doc spends with the pacient doesnt matter, but I also know this doc specificly deals with people with celiacs.....which also doesnt mean anything, but at this point I'm starting not to care whether or not I'm diagnosed, I just need adoctor so I dont have to keep going to the ER whenever I get sick, the co-pays really add up. I dont think I will be diagnose with anything like IBS because all of my "IBS" symptoms are gone completly when gluten-free. I do not have to agree to any drug a doc gives me and I most certainly would not allow an antidepresent to enter my mouth. my only problem right now are stomach issues that are very much the side effect of an ulcer, not to mention I didnt get my P this month and have been extremely dizzy and losing wieght, even though I'm eating twice as much...

Do you know for sure you have an ulcer? I would think you would already have a GI doctor if you have a diagnosed ulcer. The only reason I ask, my primary doctor thought I had one--I had these awful stabbing stoamach pains that fit every description you find on the internet for ulcers, but a endoscopy did not reveal one. But the pains went away on the gluten-free diet, and reappear when I get glutened.

LuvMoosic4life Collaborator
Do you know for sure you have an ulcer? I would think you would already have a GI doctor if you have a diagnosed ulcer. The only reason I ask, my primary doctor thought I had one--I had these awful stabbing stoamach pains that fit every description you find on the internet for ulcers, but a endoscopy did not reveal one. But the pains went away on the gluten-free diet, and reappear when I get glutened.

no, I just thought of it as one possiblity. The symptoms comes and go. I'm starting to think it may have something to do more with reproductive problems. I started having and aching lower back after goin gluten-free and some discomfort in my stomach area, its hard to tell whether or not its PMS or digestive since my pms symptoms are sometimes for 3 weeks every month...blah!

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    2. - Deanne jones replied to Matt13's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      28

      Can food allergies like milk and soy flatten villi?

    3. - knitty kitty replied to DayaInTheSun's topic in Coping with Celiac Disease
      12

      Being a burden to family/friends

    4. - Celiacandme replied to Kwinkle's topic in Coping with Celiac Disease
      5

      I’m so confused…

    5. - lmemsm replied to jasoncrest's topic in Gluten-Free Recipes & Cooking Tips
      4

      Recipe Apps?


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    • Kwinkle
      Thank you. I already cut out dairy and eggs because I found out I was having a problem with them. To be honest I’m just getting worn out 😂 
    • Deanne jones
      Hi Kitty, thank you for your e mail,  I have seen a nutritionist who seemed to be happy with the food diary I had been keeping and nothing was mentioned about extra vitamins, and I’m still using milk etc . The steroids seem to be working and everything is functioning as it should however,  the course of tablets finish at the end of February and I have an appointment with the consultant early April probably followed by another endoscopy, as far as I’m aware I have not been tested for vitamin B and will definitely discuss it with the doctor on my next visit.      
    • knitty kitty
      It might be understandable to say "friends or family weeded me or you out of their lives". Some people are fearful of getting out of their comfortable known lives and having to make changes to accommodate another.   If they are too uncomfortable to walk a mile with me, I shake the dust off my feet and journey on.  They're just not ready to learn that lesson.  But you confidently keep going on your journey.  They can catch up later.  
    • Celiacandme
      You might also be sensitive to other things while you are healing. Dairy, for example. It won't harm you from a celiac standpoint but is inflammatory and could be bothering you. Have you been keeping a food & symptom journal? Might be worth it for a week to see if you notice something you are eating prior to the times you feel your worst. I hope you start feeling better soon. 
    • lmemsm
      Someone recently recommended Superfoods for looking up recipes free of allergens or intolerances.  It's a web site but there's also an app.
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