New Girl Here With Questions! :d

[xOuchie911x]

Hello everyone. Not sure if this is the right place to introduce myself. I am a 31 year old woman from New Hampshire and am here to learn more about Celiac Disease. 

 

I have had several symptoms for years now and have had no answers from drs. I lost faith in them a long time ago. I have tried finding the cause of my issues in the past, but I get close to test date and then the dr says something that makes me ashamed of my symptoms. The last incidence was her saying "They won't find anything. I know you, you are just nervous. There's nothing wrong". I have been mistreated emotionally by drs, so I have shied away. I know that was a bad thing to do but that's what my reasoning was.

Meanwhile I am 98 lbs, have issues with my periods being too short or missing them or having too many. I have gotten rashes on my skin that look like purpula, except mine are confined to one patch on my legs or arms. I may have gotten this rash in other places and have not noticed. I also get these tiny red dots on my chest area mostly. Neither of these things itch or cause pain. I have had heart palpitations before and have had a stress test and all seems ok with my heart. I am a smoker and I know that is bad, but I get some strange things happen to me where as other smokers I know in my immediate life do not. Also, I get bloated after I eat. I know some bloating is normal but mine tummy just pops out too much at times. I had a sandwich and canned soup today and that's when I noticed it. I also have itchy dry skin that is very annoying to me. I have had a couple drs suggest endometriosis to me as a reason for my cysts and funny periods.

 

It is written in my medical chart that I am anorexic and have anxiety. I do not get any more anxious than anyone else. I am just frustrated. Although I have had some unexplained anxiety attacks, some big some small...I have not had a huge one in a long time though. My living situation is better now. But I do fee anxious for no apparent reason at times. As far as the anorexia goes, I am not anorexic. I will eat when I have the money to buy food. But eating can be difficult at times. Right now I feel full and heavy even though I haven't eaten much today. I had a BM today but it was small and difficult to go. Sometimes I feel like I really need to go and nothing ever happens. 

 

That's all I will say for now because this is getting long. I am seeing a general dr on the 13th and I am nervous that this will be one more dr who doesn't listen to me. I want the appropriate blood tests to check for Celiac to start, then an endoscopy if need be. What blood tests are needed to check for this? I want to be very very clear with this dr. It is the clinic and they are not always good about things but it's all I have for now. So I want to be ready and prepared with a list of my symptoms and the things I would like to see happen. I am just afraid of being pushed to the side, of being told I am jut an anxious anorexic. I am not anorexic. I am anxious because I get treated poorly by lots of drs.

 

If you have read all of this then I thank you. And it's nice to meet you all.

[Mum in Norway]

Hi and welcome!

 

I don't know what tests to ask for, at the whole testing prosess is different in norway. But I would like to say that if you feel that gluten is the issue, the stick to the plan end get proppely tested. Doctores should treat theire patients with respect and undrestanding, even if they dissagree with them.

If you for some reason can not get all the testing doe, or it comes back normal, you can try to go glutenfree anyway, and see if that helps. If you do that, remember that it can take time to get better, and stick strickty to the diet for atleast 3 months. But get tested for celiac BEFOR you go glutenfree!

 

Good luck to you, hope you find some answers

[1desperateladysaved]

Greetings Ouchie,

 

I have had similar frustrations with doctors, but now I can use them when I need to.  Having a handwritten list of questions is helpful.  You also had a good idea writing down your symptoms.  Then you won't or can't forget them if you get stressed.  I hope you will find one that respects and listens to you.

 

I hope you will get some definitive answers.  If you had celiac, it could explain some of those symptoms.  Get well  ***.  Let us know first how your testing and doctor visit goes and then how going gluten free now.  It isn't too early to learn about gluten free, but wait to start until your tests are finished. 

 

D

[nvsmom]

Welcome to the board.  

 

The full celiac blood panel is:

• tTG IgA and tTG IgG (tissue transglutiminase)
• DGP IgA and DGP IgG  (deaminated gliadin peptide)
• EMA IgA  (endomysial antibody)
• total serum IgA
• AGA IgA and AGA IgG  (anti-gliadin antibodies)

 

In order to have accurate tests you must be eating gluten in the weeks prior to testing. The first three tests indicate damage is being attempted on your intestines by antibodies (as seen in celiacs). The total serum IgA is a control test to make sure you make enough IgA for your results to be accurate - 5% of celiacs don't.  The last test indicates a gliadin sensitivity and is thought by some to work for both celiacs and non-celiac gluten intolerant (NCGI) individuals (who do not have villi damage).

 

You should request nutrient testing too. Celiacs are often low in iron, ferritin, B's, D, calcium, zinc, and potassium (which can lead to easy bruising and tiny hemorrhages (purpura and petichiae) and may be responsible for your skin rashes/dots).

 

You might want to get a blood count (RBC and plateletrs) too as low platelets can lead to petichiae too.

 

Thyroid troubles are common in celiacs and can cause stomach and metabolism problems. Try requesting TSH, free T4 and free T3, and TPO Ab as well. Some of you symptoms could be attributed to Hashimotos when one is swinging back and forth between hyper and hypothyroidism.

 

It's also a good idea to get copies of all of you labs. Not all doctors are created equal when it comes to interpretting labs... as you probably already know.  

 

Let us know how it goes and feel free to ask plenty of questions.    Good luck.

[GottaSki]

Welcome!

New doctor...new opportunity.

Doctors often start with a question such as this:

What am I seeing you for today...these and similar questions often lead us away from talking about the whole health picture.

Bring two pieces of paper into the exam with you.

First a list of symptom history. Review this with the doctor....be sure to point out while you do have some anxiety - you do not have an eating disorder - explain about the bloating and bowel issues as you have here. I find having a simple bullet point list helps me give the doctor a more accurate picture than he/she gets when I let them lead the conversation.

Second is list if all the testing you are looking for to rule out Celiac Disease. Nicole has provided a very complete list...I would use it...here is the list of nutrient/misc tests my celiac doctor ran at diagnosis along with all my follow ups.

B1 B2 B6 B12 D K Iron Ferritin Copper Zinc

CMP - Complete Metabolic Panel covers many of the other nutrients not listed above

CBC - Complete Blood Count checks the items Nicole mentioned plus liver enzemes, etc.

An optional third item would be a complete list of symptoms associated with Celiac Disease....I will add the link later...cant do from my mobile device.

Most important - preparation for this appt will help to reduce the anxiety that can happen at any doctor appt. Prepare and breath. Before you go into the appt concentrate on taking a few deep breaths and then again once you are in the exam room.

The doctor should be there to help...unfortunately some of them forget this and are dismissive. Hopefully this will be one of the ones that listens to his/her patients.

Hang in there

[dotsdots]

Hi Ouchie!

 

I am a new girl too, but I'm actually getting up there in years - I'm 64 and just now getting diagnosed. I have had a myriad of symptoms all my life that no one realized was celiac disease, and I've had doctors discount me too. It's so annoying and has also caused me to mistrust doctors. So I feel for you, and understand a little how you might feel.

 

I believe everyone has suggested some great ideas. The one that I really would emphasize is to take a list of symptoms into the doctor with you so you don't get sidetracked while talking with him/her. Two weeks ago I went in to a new doctor who I had only seen once before, a naturopathic doctor, with a list of 20 symptoms. She paid attention right away and was very kind. 

 

She has ordered the whole panel which Nicole suggested, so I'm hoping that I will get an answer soon myself. The only thing that could make it harder for me is that I went off gluten for a short while because my adult daughter who is your age, found that she cannot tolerate gluten and we have some symptoms in common. For example, the blistery rash on my fingers went away right away, but came back when I reintroduced gluten. 

 

So stay on gluten until you get all your testing done. There seems to be differences of opinion on how long you should be eating gluten  before testing, so it's safer to just keep eating it until you are tested.

 

Good luck to you!

[xOuchie911x]

Thank you all for your responses and welcoming me here

Yes I am still eating gluten until I get tested. I am just not sure how much gluten a day to eat. I read a post here once that said about 4 slices of bread a day, something like that? I had a sandwich and potato salad today, but I don't now if I can handle anymore bread....I am not so hungry and am usually not so hungry. I eat smaller amounts of food through out the day because my tummy feels upset and bloated a lot. I don't know how to get enough gluten for a test to be accurate.

[GottaSki]

One to two pieces of glutenous bread per day is plenty.

[greenbeanie]

Welcome, Ouchie. I just wanted to second (or third or fourth?) what others have suggested about staying on gluten until all celiac testing is done, but then giving a strict gluten-free diet a good long try afterwards, regardless of the test results and regardless of whether your doctor thinks you're being silly. As you can see from my signature below, I had a long list of symptoms for 30+ years that doctor after doctor kept dismissing as in my head. I can't tell you how many times I left doctors' offices in tears because they wouldn't even bother to read my list of symptoms. It was like once the word "anxiety" got into my chart as the supposed-cause of my first awful rash at age six, every subsequent doctor assumed that anxiety was the source of all my problems. The more I protested, the more convinced they became that I was an irrational hypochondriac. I was even hospitalized for severe ataxia at one point (admitted through the ER by doctors who'd never seen me before, based on symptoms that were objectively obvious), and after looking at my files - but before he even examined me! - the neurologist still insisted that it was all in my head. Sometimes doctors just won't take people seriously if they have atypical problems, and all you can do is try your best to make them listen.

I really hope the new doctor will give you some help and do thorough testing. But even if they won't do all the tests you request, or if the tests come back normal, a gluten-free diet is still worth a try. My celiac tests were negative after a gluten challenge in which I ate about two pieces of bread per day. I simply couldn't handle more, and I ended up without an official diagnosis of anything. However, my life has improved so dramatically in the six weeks I've been gluten-free that there's no way I'd ever go back. I am just as strict about my diet as if I had a celiac diagnosis. If you do a gluten-free trial for several months (AFTER all testing is done) and it doesn't help - well then, at least you would have tried, and you could continue to explore other possibilities. But if it does help, then that would be a great, even if the doctors never believe you! Good luck.

[xOuchie911x]

Thanks Ski and green. I try to consume as much gluten as possible everyday just to make sure the tests come out accurate. But now at least I know one to two slices of bread a day will be good enough.

 

Another question I had was : What is the difference between Celiac Disease and Celiac sensitivity? I have been looking on the internet and found a few things but I guess I am not completely understanding all of the dr terms they use.

 

Other things I failed to mention in my very first post were, I get these red spots on my skin. They are flat round red spots. I have a few on my hands, one on my nose and some on my chest. Can either celiac disease or sensitivity do this to me?

 

Also I get terrible rectal pain that can last anywhere from a minute to about 2 hours. I have not had it last as long as 2 hours though. Thank goodness. The pain seems worse around the time of my period. But I do get it throughout the whole month. I just don't know what triggers this.

[nvsmom]

Another question I had was : What is the difference between Celiac Disease and Celiac sensitivity? I have been looking on the internet and found a few things but I guess I am not completely understanding all of the dr terms they use.

 

Other things I failed to mention in my very first post were, I get these red spots on my skin. They are flat round red spots. I have a few on my hands, one on my nose and some on my chest. Can either celiac disease or sensitivity do this to me?

 

Also I get terrible rectal pain that can last anywhere from a minute to about 2 hours. I have not had it last as long as 2 hours though. Thank goodness. The pain seems worse around the time of my period. But I do get it throughout the whole month. I just don't know what triggers this.

 

Celiac disease is an autoimmune disease where the body attacks the villi of the small intestine due to a gluten intolerance. Non-celiac gluten intolerance, or sensitivity. (NCGI or NCGS) has all the same symptoms and inflammation as a celiac but the body doesn't attack the intestines. Celiac can be diagnosed via blood tests or endoscopic biopsy where as NCGI is diagnosed through a positive reaction to the gluten-free diet, although some docs think the AGA IgA and AGA IgG tests may work for both celiac disease and NCGI. Both require the patient to avoid all gluten 100% of the time of their health will suffer. 

 

Flat red spots may be petichiae that I mentioned earlier. If it is that, they are caused by tiny little hemorrhages under the skin due to low potassium (K) or low platelet counts. It is not usually a direct symptom of celiac, but low K can be caused by celiac disease and eventually result in petichiae.

 

Could the rectal pain be hemorrhoids? Those are pretty common in celiacs from D or C (and straining). They can hurt a fair bit and cause bloody stools (quite scary if you aren't expecting it).

[xOuchie911x]

Celiac disease is an autoimmune disease where the body attacks the villi of the small intestine due to a gluten intolerance. Non-celiac gluten intolerance, or sensitivity. (NCGI or NCGS) has all the same symptoms and inflammation as a celiac but the body doesn't attack the intestines. Celiac can be diagnosed via blood tests or endoscopic biopsy where as NCGI is diagnosed through a positive reaction to the gluten-free diet, although some docs think the AGA IgA and AGA IgG tests may work for both celiac disease and NCGI. Both require the patient to avoid all gluten 100% of the time of their health will suffer. 

 

Flat red spots may be petichiae that I mentioned earlier. If it is that, they are caused by tiny little hemorrhages under the skin due to low potassium (K) or low platelet counts. It is not usually a direct symptom of celiac, but low K can be caused by celiac disease and eventually result in petichiae.

 

Could the rectal pain be hemorrhoids? Those are pretty common in celiacs from D or C (and straining). They can hurt a fair bit and cause bloody stools (quite scary if you aren't expecting it).

I have had this rectal pain for years and years. Drs look at me like I am nuts but was told by one to have a colonoscopy. I didn't then because of the mistreatment I got from drs. I gave up and hid. But it's something I wish to have done. If I can just find a dr who believes that I really don't feel well.

[june27]

Welcome!

 

I am not sure where you live in NH or if you are open to Naturopathic medicine, but I go to a Naturopathic doctor in Derry, NH.  She is very kind and listens to what you have to say.  I first went in because I was having a lot of issues with seasonal allergies, and extremely dry eyes and I was beginning to think there was something more systemic going in.  I was diagnosed with Celiac within 2 months.  Let me know if you are interested, I will pass along her info.  

[xOuchie911x]

Hi June. Thank you. I will certainly look into that if this dr visit I have coming up doesn't go well.

 

Another question I had for everyone is, I used to get the rash on my skin where it looked like the blood was coming to the surface of my skin - kind of like Purpura. I haven't seen that type of rash in a while on me. I read that it has something to do with blood platelets. Since I haven't seen this rash does that mean my platelets have fixed themselves? Will my blood tests not be able to detect there was, or could still be, a problem?

[nvsmom]

Purpura is bleeding under the skin and can be caused by a few things, but low platelet counts are the most common. Low platelet counts can reverse them selves in many cases. In other cases, treatment is needed... My platelet count became very low (2K when it should be over 100K) but that was pretty unusual. If counts get down to 50K they start watching you closely and if it is below 30K, treatment could be warranted.

 

If you platelet count was low in the past, the CBC test will not show that. It could show that your red blood cells are newer than most, but I think that's it... I'm not medically trained though, so take what I say with a grain of salt.  Good luck.

[xOuchie911x]

Purpura is bleeding under the skin and can be caused by a few things, but low platelet counts are the most common. Low platelet counts can reverse them selves in many cases. In other cases, treatment is needed... My platelet count became very low (2K when it should be over 100K) but that was pretty unusual. If counts get down to 50K they start watching you closely and if it is below 30K, treatment could be warranted.

 

If you platelet count was low in the past, the CBC test will not show that. It could show that your red blood cells are newer than most, but I think that's it... I'm not medically trained though, so take what I say with a grain of salt.  Good luck.

I haven't seen the Purpura but I do still have the tiny red flat spots (petechiae?) I noticed some more on my shoulder today. I hope I am eating enough for the tests. There are days when I can hardly eat because of slight nausea or a general ill feeling.

 

I also had another question, and I am sorry if I ask a lot. But I noticed several months ago that my cheek has become a bit sunken in, Now I am 98 pounds but if it was due to weight loss wouldn't it be both sides? And can celiac disease make your skin that way?

[nvsmom]

I really don't know about the skin thing... Perhaps start a new thread about it and ask again - more people will see it that way.  

 

Most doctors ask for two servings of bread per day for testing. I advise eating those foods that you will miss once gluten-free like favourite muffins or a lasagne.  Most people go over two servings - a big plate of spaghetti will do it.