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constantly questioning

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constantly questioning Newbie
constantly questioning
Posted

I posted a question and a response or two...but, I never really introduced myself. Looking back, I guess I have been a celiac for three years. My symptoms started after I had my fourth surgery. I have seen multiple doctors and have done hours and hours of research trying to find out what was wrong with me. My recent bloodwork just came back negative for a celiac allergy. But, I also have been on a gluten free diet for about six months (with the occasional slip-up**See my restaurant post). One doctor told me to "just get married and my problems will go away." He said my problems were from IBS and stress. However, after seeing a nutrionist who put me on a strict IBS diet, I landed up on the floor in total pain after eating artichoke pasta. Little by little it became clear what was going on...at first very confusing (look at my tummy it looks like I'm pregnant. oh geez I gained five pounds overnight. the trips to the bathroom, the sudden milk intolerance) Anyway I was really feeling great two days ago...i was on a gluten free high. But tonight I am down in the dumps. I read a post about a lady crying in a detox tub...that is how I feel right about now. Anyway, sometimes it feels really lonely (I don't know any body around with it...the one person I do know is hesitant to talk about it) I guess I just wanted to talk to other people out there who can relate. Thanks for the forum...I like reading it....it is so very helpful.

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Lisa Mentor
Lisa
Posted
I posted a question and a response or two...but, I never really introduced myself. Looking back, I guess I have been a celiac for three years. My symptoms started after I had my fourth surgery. I have seen multiple doctors and have done hours and hours of research trying to find out what was wrong with me. My recent bloodwork just came back negative for a celiac allergy. But, I also have been on a gluten free diet for about six months (with the occasional slip-up**See my restaurant post). One doctor told me to "just get married and my problems will go away." He said my problems were from IBS and stress. However, after seeing a nutrionist who put me on a strict IBS diet, I landed up on the floor in total pain after eating artichoke pasta. Little by little it became clear what was going on...at first very confusing (look at my tummy it looks like I'm pregnant. oh geez I gained five pounds overnight. the trips to the bathroom, the sudden milk intolerance) Anyway I was really feeling great two days ago...i was on a gluten free high. But tonight I am down in the dumps. I read a post about a lady crying in a detox tub...that is how I feel right about now. Anyway, sometimes it feels really lonely (I don't know any body around with it...the one person I do know is hesitant to talk about it) I guess I just wanted to talk to other people out there who can relate. Thanks for the forum...I like reading it....it is so very helpful.

We have all been where you have. I did have to laugh at your doctors saying "just get married and your problems will go away". I wonder where he was coming from with that statement.

You are not alone. I have been hanging around here for two and half years and I have learned everything I know about Celiac from here. My medical community was of no help to me. And, I have made some really wonderful friends.

I hope you feel at home here.

mushroom Proficient
mushroom
Posted
I posted a question and a response or two...but, I never really introduced myself. Looking back, I guess I have been a celiac for three years. My symptoms started after I had my fourth surgery. I have seen multiple doctors and have done hours and hours of research trying to find out what was wrong with me. My recent bloodwork just came back negative for a celiac allergy. But, I also have been on a gluten free diet for about six months (with the occasional slip-up**See my restaurant post). One doctor told me to "just get married and my problems will go away." He said my problems were from IBS and stress. However, after seeing a nutrionist who put me on a strict IBS diet, I landed up on the floor in total pain after eating artichoke pasta. Little by little it became clear what was going on...at first very confusing (look at my tummy it looks like I'm pregnant. oh geez I gained five pounds overnight. the trips to the bathroom, the sudden milk intolerance) Anyway I was really feeling great two days ago...i was on a gluten free high. But tonight I am down in the dumps. I read a post about a lady crying in a detox tub...that is how I feel right about now. Anyway, sometimes it feels really lonely (I don't know any body around with it...the one person I do know is hesitant to talk about it) I guess I just wanted to talk to other people out there who can relate. Thanks for the forum...I like reading it....it is so very helpful.

Welcome, and chin up.

I understand all too well that feeling of loneliness; even when people try to understand they really have no idea what you are talking about. And when you have a doctor so understanding that he thinks if "you just get married" your symptoms will go away. Talk about a joke of a physician! Sometimes it seems such a lonely journey when you are floundering around trying to figure things out for yourself, what you should try, what you should eliminate, with lots of failures along the way making things worse (like your artichoke pasta), that you do just want to sit down and blubber. But it will get better. Just remember that what counts is not how far you fall but how high you bounce!

So keep scouring these forums for lots of help and useful information, lots of support (much more than most of us get from our health care professionals, even our families if they do not share our problems), and try to keep your spirits high and your resolve strong that you will overcome this no matter how long it takes :)

Neroli

constantly questioning Newbie
constantly questioning
Posted
  • Author

Thank you. I get so frustrated fighting with the doctors. And this website does have so much valuable information.

rinne Apprentice
rinne
Posted
I posted a question and a response or two...but, I never really introduced myself. Looking back, I guess I have been a celiac for three years. My symptoms started after I had my fourth surgery. I have seen multiple doctors and have done hours and hours of research trying to find out what was wrong with me. My recent bloodwork just came back negative for a celiac allergy. But, I also have been on a gluten free diet for about six months (with the occasional slip-up**See my restaurant post). One doctor told me to "just get married and my problems will go away." He said my problems were from IBS and stress. However, after seeing a nutrionist who put me on a strict IBS diet, I landed up on the floor in total pain after eating artichoke pasta. Little by little it became clear what was going on...at first very confusing (look at my tummy it looks like I'm pregnant. oh geez I gained five pounds overnight. the trips to the bathroom, the sudden milk intolerance) Anyway I was really feeling great two days ago...i was on a gluten free high. But tonight I am down in the dumps. I read a post about a lady crying in a detox tub...that is how I feel right about now. Anyway, sometimes it feels really lonely (I don't know any body around with it...the one person I do know is hesitant to talk about it) I guess I just wanted to talk to other people out there who can relate. Thanks for the forum...I like reading it....it is so very helpful.

Hi and welcome. :)

I know hanging out here really helped me to feel less isolated, I hope you will find the same thing too.

Seriously, you are not alone in having dealt with doctors that are spectacularly unhelpful, I know I did.

It takes time, be patient with yourself. :) And it is okay to feel lousy about it all, I think small pity parties are permitted as long as I remember that ultimately I am the only one who can pull up my big girl panties. :lol:

Robink Newbie
Robink
Posted
Hi and welcome. :)

I know hanging out here really helped me to feel less isolated, I hope you will find the same thing too.

Seriously, you are not alone in having dealt with doctors that are spectacularly unhelpful, I know I did.

It takes time, be patient with yourself. :) And it is okay to feel lousy about it all, I think small pity parties are permitted as long as I remember that ultimately I am the only one who can pull up my big girl panties. :lol:

Interesting, I thought that once I would become Gluten free my depression and anxiety would lift some. Am I wrong in assuming this? I know how you feel, lonely, I don't have anyone to talk to about this either. I have not been formerly diagnosed just yet, but, alot of syptoms sure are pointing in the Celiac direction. I am waiting for a call back now from my general practioner. I left message with nurse asking for a Celiac panel with ttg, as per another Dr.'s suggestions. Robin

lizard00 Enthusiast
lizard00
Posted
Interesting, I thought that once I would become Gluten free my depression and anxiety would lift some. Am I wrong in assuming this? I know how you feel, lonely, I don't have anyone to talk to about this either. I have not been formerly diagnosed just yet, but, alot of syptoms sure are pointing in the Celiac direction. I am waiting for a call back now from my general practioner. I left message with nurse asking for a Celiac panel with ttg, as per another Dr.'s suggestions. Robin

Welcome Robin!!

Your depression and anxiety will likely lift when you become gluten-free, but the initial feeling of triumph fades and you realize that while the 4,000 other people at the conference can eat the sandwich, you can't. (That just happened to me this weekend and I was on the verge of a breakdown) And if you are among the fortunate of our forum, you have a doctor who understands what Celiac is all about... notice I didn't say the majority.

The point in this is that it's OK to feel bummed out, cry, scream whatever when the reality of the diet hits you full force. But then be able to pull yourself out. It doesn't mean you are depressed or anxious, just adjusting to the curve ball that is life.

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Robink Newbie
Robink
Posted

thank you for responding. I am so miserable, I'll do anything at this point. The biggest thing for me is extreme fatigue, always feeling sick, never feeling calm, always irritable, moody. I have been to so many different docs and have been told, well, maybe this, or here, take this medicine, I've lost all hope of ever having peace and a hope for my childre, which seem to have all of my symptoms, adhd, anxiety, achey joints, sinus trouble, irritable bowel.......

constantly questioning Newbie
constantly questioning
Posted
  • Author

Hi Robin...And, I thank everyone else that responded to my post...I wrote it last week when I was feeling really low. I notice that my moods change depending on my diet. I know how you feel with the doctors too. I have been fighting for so long, and they just tell me it is IBS and stress related. And, I tell them hey look...I don't know what it is but if I eat french fries at one place I am fine, if I eat them some other place, I am sick. If I eat pizza, this equals five pounds gained, and week of being sick. Is that IBS? They look over their charts at me and recommend pills. All I know is this celiac things has its ups and downs, but it is good to know there are other people out there that can offer advice. Thanks Everyone. Robin, good luck.

AliB Enthusiast
AliB
Posted

I was trying to figure out Robin if you are already gluten-free. If so, it may affect your Celiac test. These things are not terribly reliable and do often come back negative even when it is the problem but that is even more likely if you have already started gluten-free.

If your doc then decides you need a biopsy too you would need to be consuming gluten for some while beforehand so that the damage resumes, as as soon as you drop gluten the gut starts to heal. It is better to get all that done before gluten-free if possible, or at least very soon after.

Both you and 'CQ' seem to be displaying fairly obvious Celiac or at the very least severe gluten intolerance symptoms. Gluten can affect any part of the body and neither the brain, hormonal or nervous systems are immune to that. It apparently acts like an opiate on the brain! Looks very much like your kids need to get off it too pretty urgently (after tests).

CQ, The fact that you can have fries at one place that affect you and not at another is almost certainly indicative of the oil having been contaminated by gluten from fish batter or whatever in one place but not in another. Some places use separate frying tanks for their fries and their fish so there is far less likely to be contamination. Worth asking when you go in! How often they change the oil can also be a measure of their quality, too. Nothing worse than rancid fries - yuk! I would say that the fact you are that sensitive is more than enough reason to drop the stuff.

Doctors just generally don't seem to have a clue. What they know about Celiac you could write on a postage stamp. When I asked for the test (yes I asked, the doc didn't suggest it), I also asked for information. There was nothing. Nothing in the Surgery, the doc had nothing and I couldn't even get anything from the Local Hospital! Talk about hopeless. If you think yours are bad over there, here in the UK as far as Celiac is concerned they are still in the Dark Ages! Because my (very basic) test came back negative, Celiac has just been dismissed but the doc did say that if I was helped by being gluten-free I should stay on it - isn't that a good enough damn diagnosis???? Arrrrgggh!

larry mac Enthusiast
larry mac
Posted
I posted a question and a response or two...but, I never really introduced myself. Looking back, I guess I have been a celiac for three years. .... Thanks for the forum...I like reading it....it is so very helpful.

cq,

Welcome to the forum, but I gotta be honest. I find it very disconcerting conversing with someone who I don't even know is a guy or a girl. Your introduction is a little sparse, IMHO. I've never fathomed why some people don't put anything in their profile.

best regards, lm

  • 3 months later...
constantly questioning Newbie
constantly questioning
Posted
  • Author
cq,

Welcome to the forum, but I gotta be honest. I find it very disconcerting conversing with someone who I don't even know is a guy or a girl. Your introduction is a little sparse, IMHO. I've never fathomed why some people don't put anything in their profile.

best regards, lm

Hi Lm.

You know I just checked some of my old posts. You welcomed me and then kinda insulted me. I am sorry you don't know if I am a guy or a girl, but I am not so techinically savy. I don' t even know how to "put anything in my profile?"

oh and PS your posts are a little negative

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      how much gluten do I need to eat before blood tests?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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