Please Tell Me This Will Be Ok?

[Electra]

Hi I'm new here and I have not officially been diagnosed, but I have been having unexplained "undiagnosed" symptoms for a few years now and no one can figure it out. While I was looking on line for my intestinal disoroder to see if there were any other symptoms or complications I was missing I came accross Celiac and I have EVERY single symptom or have had them in the past!! What is alarming to me is that my daughter has this rash that we can't seem to diagnose and Celiac can have the same rash.

Today I thought to myself "NO there is no way I have this it's just impossible, so I ate about 8 crackers filled with gluten and now my symptoms are going wild. It's almost like I'm on drugs or something. I am so irritable and jumpy and shaky almost like I'm haveing withdrawls or something and my leg is so numb again that I had to break out the heating pad. PLEASE tell me I don't have Celiac? How can I get diagnosed now so I can begin seeking treatment. I don't have an appt until next Monday and I feel at this point that this can't wait.

I filled my daugher with crackers and toast today to and her symptoms also went wild. Is there any way I can be mistaken here? How could I give this to my only baby girl? I'm starving and can't eat anything because it causes me so much pain and termoil that I'd rather just be hungry!!

Where do I go from here?

~~A~~

[happygirl]

If you can wait, and I know its hard, I would recommend waiting. Keep eating gluten. While you are at the doctor's, tell him you want the FULL celiac panel run. (www.celiaccenter.org and click on FAQs lists the ones you want...often, doctors only run 'some' of them and you need the full panel. Print it out and bring it with you.) Its not 'that' far off and could save you some trouble in the long term. Can you call your doc and see if you can get in earlier?

I would also recommend that you have your daughter's rash biopsied by a specialist knowledgable in Celiac. Have her bloodwork run ASAP also, while she is still eating gluten.

I know you want to jump in, but this might make things easier down the road. It is easier to have a solid diagnosis. Plus, if you decide you want one later on (if you end up questioning if gluten is the problem!), you would have to go back on gluten for a long period of time for the tests to be somewhat accurate.

The "normal" standard is to have the bloodwork done, and then the biopsy. That is to get the gold standard diagnosis. However, many people only have the bloodwork, and many don't have any...they just go without testing. For some, having the official diagnosis is important...for others, it is not. If you are ok without having a diagnosis, then I would suggest trying it now. But testing after that will not be useful. You have to be eating gluten. (think of it as a diabetic. uncontrolled, their blood sugar levels are all over the charts. you test, and it shows signs of diabetes. you get it under control, and you test again....levels are normal. it doesn't mean you DON'T have diabetes, it means the symptoms and signs are controlled. Same with Celiac...you have to be eating gluten for the tests to show you have it. A diagnosed Celiac on a strict gluten free diet will have "normal" blood tests --- they have healed. If they eat gluten again, the problems will return, though. The diet is management, not a cure)

The problem is that many doctors know little to nothing, or know old and outdated information. Please, I urge you to get tested for it and not let the doctor say no. Tell him you want it run!

The other option is that you could go gluten free after the bloodwork is drawn, if you are not interested in having the endoscopy and biopsy...for the "gold standard." But, if you want the biopsy, you HAVE to keep eating gluten. (i'm telling you all this because I had the bloodwork run, it was positive, and my doctor, who knew nothing about Celiac, told me to go gluten free before the biopsy. My biopsy was negative as a result. Three years later, I still have trouble with doctors not accepting it).

The other option is that you have non-Celiac gluten intolerance. That will not show up on the bloodwork but, like Celiac, would respond to a gluten free diet. Even if testing is negative, it would be worth it to go on the gluten free diet and see what happens!!!!!

It used to be thought that Celiac affected 1 in thousands...a rare disease. They now know that it affects 1 in 133 Americans! It is also genetic...Just having the genes doesn't mean you have it, but it explains why it can run in families.

I hope this helps, some. Feel free to PM me if you would like more information! Either way, I hope you find answers to your health!

[super-sally888]

Hi and Welcome,

You have come to a good place. It is possible that you and your daughter have celiac. Though it could possibly also be a reaction to something else in the foods.

Diagnosis is not necessarily easy. For some people a blood test will give clear results, and others not. However, a very surefire diagnosis is the use of an elimination diet. If you can use the diet and your symptoms all disappear that is your answer.

I don't yet have a 'diagnosis' but the diet surely is helping. So even without a label I am sticking to gluten free.

There is a lot of info here on diet, but the simplest way to start is to limit your diet to unprocessed foods (meats, fruits, vegetables, rice, nuts (if you can take these)) as you research further..... What you want to do is avoid foods which contain wheat, barley, rye and oats (oats becuase of cross contamination isseus). Unfortunately this includes most processed foods, and even things like soy sauce.. where it is used as a thickener... The diet is actually very healthy...

The good news is that many people improve dramatically and rapidly when they get the diet right. It is worth it!

I am sure you will get plenty of good support and info here....

Best wishes

Sally

[tarnalberry]

If you feel that you need a doctor's diagnosis to stick with a gluten free diet, then six more days in comparison to years of symptoms won't be too much more waiting. At that time, you can ask for a blood test (to include anti-gliadin IgA and IgG, tissue transglutamase IgA and IgG, and total IgA) and consider whether or not you want to go for a biopsy as well. In the meantime, you must continue to eat plenty of gluten.

[Electra]

my daughter has an appt with the pediatrician tomorrow and she does not want to eat anymore because it makes her sick so she only wants to constantly drink milk. She does have quite a few spots still left on her and she broke out with some more today. Can the pediatrician do the skin biopsy? If so will it test positive if she only has a small amount of gluten in her system? Man I'm so scared that this is going to hurt her permanently. She's only 2 so I just can't risk doing permanent damadge to her!!

[CarlaB]

Be sure that the pediatrician knows how to biopsy the rash if he's the one to do it. It's my understanding that it's the skin around the rash, not the rash itself that they biopsy.

[daffadilly]

Good for you for getting your daughter in right away. See if you can also get yourself in right away. If you ask they might make room for you - oh heck plead. Then if your blood test comes back negative, just test thru Enterolab.com, no need to be eating gluten to test with them. you can read the info on their site and almost all of my posts

[Electra]

My pediatrician probably has no clue how to do it. If I have to wait to get into a speicialist I swear I'll lose it. I have been living with this stuff for years and at this point I'm pretty sure it's caused me permanent nerve damadge. I CAN NOT allow that to happen to my daughter. How can I be an adovcate without acting like I know everything!! My only concern is for my daughter at this point so I just want them to test her right and get the results right. If it's not Celiac then that will be great, but if it is then it needs to be diagnosed so I can get the nutritional support I need to make our lives healthy!! UG I never in a million years thought it would be anything like this (I actually thought it would be something much worse) but at this point I'm not sure it's healthy for me to continue eating Gluten if it's causing serious damadge. I can barely walk most days!! If I stop eating or get too sick to eat my symptoms get better!! Man this sucks!!

[lovegrov]

I know it's difficult, but waiting for your daughter is NOT going to do her any permanent damage. And waiting for yourself won't so any more damage. In most cases, even adult damage can be reversed. Mine was and I was so sick I was in the hospital for 11 days and missed 10 weeks of work.

Your pediatrician certainly will NOT know how to do a skin biopsy, but if you show him the necessary blood panel that should not be a problem. Do NOT take no for answer on this panel. If you still want the biopsy you'd need a GI or dermatologist familiar with celiac disease or DH. Any dermatologist familiar with DH can usually spot it without a biopsy.

richard

[tarnalberry]

It is *highly* unlikely that another few weeks is going to be the difference between permanent damage or not. Refractory sprue is rare, even among people who go the average 11 years before diagnosis. That's not to say it isn't serious, but is to say that it is nothing like an anaphylactic allergy.

[Electra]

Thank you so much everyone for the info. It's so helpful!! I am just beside myself right now and don't have a clue where to go from here. I just can NOT get over the fact that this disease fell in my lap and is the only thing that explains my years and years of symptoms and then to top it all off my daughter has a skin condition that (seems) typical of Celiac!! HMMMMMMMMMMMM it seems way too coincidental to me!! We both eat the same things and seem to be sick at the same time and when we get sick we don't eat and get better. Mine has actually gotten to the point of where I am losing feeling in one leg and occassionally my arm. From what I've read that could be nerve damadge and if that's the case it will NOT repair on it's own!! I'm just glad I at least have something to go on now. Any hope is better then what I had a few days ago!! Thanks again everyone I really need the extra encouradgement and support right now!!

[Nantzie]

Just wanted to give you a {{{hug}}}. Everything is going to be okay. Being sick and not knowing what it causing it is the worst part of it.

Just remember that we're all here for you. That's why we're here. That's why, even when we can do gluten-free with one hand behind our backs, we come back every day. Because we were in the same spot as you are right now. Scared, confused, angry, overwhelmed. We want to help you like we were helped when we first came to this board.

I ended up being very, VERY lucky. I had pain and mobility symptoms to the point that most days I could (also) barely walk. That was for over two years. I was planning on asking my doctor about what I needed to do to get a handicapped placard for my car when I found out about gluten. When I went gluten-free, it was like somebody flipped a switch. All of my GI symptoms and my mobility issues went away. (I had had GI symptoms for 18 years at that point.) From what I have read here, most people with neuro or mobility issues have a much harder road than I did. So I know how lucky I am. I just wanted you to know that it is possible that there will be improvement.

To complicate things, I had negative blood tests and a negative biopsy. But because I did a trial of the gluten-free diet, it was determined that gluten was causing my symptoms. My regular doctor and my GI doctor are fully supportive of my being gluten-free. My GI doctor told me, after my negative endoscopy, but reporting my amazing results on the gluten-free diet, that he had 3-4 other patients who all tested negative, but tried the diet and it was clear that gluten was causing their symptoms. My regular doctor has several other patients now that tested negative, but had "immediate and life-changing results" (her words) from the gluten-free diet. Now she says that she advises her patients who present with symptoms, or who are wondering if gluten is a problem, to try the diet just to see if it helps them, despite test results. I have the most WONDERFUL, supportive, lovely doctors.

There have been discussions on the board a few times that have led me to believe that it's pretty common to have negative testing if you have pain or neurological symptoms. So no matter what the tests say, PLEASE try the gluten-free diet. If I hadn't, I firmly believe I would have had (and very much needed) that handicapped placard.

I can feel your distress with all of this. For me, the emotional/psychological symptoms the gluten gives me are the worst of all of it. I can handle the GI stuff. I can even handle the pain and lack of mobility. But the anxiety, depression, anger, insomia, nightmares, etc. No way. It's those symptoms that really keep me on the straight and narrow when it comes to the gluten-free diet.

Welcome to the board. We're all glad you found us.

Nancy

[ravenwoodglass]

Mine has actually gotten to the point of where I am losing feeling in one leg and occassionally my arm. From what I've read that could be nerve damadge and if that's the case it will NOT repair on it's own!! I'm just glad I at least have something to go on now. Any hope is better then what I had a few days ago!! Thanks again everyone I really need the extra encouradgement and support right now!!

Not much time so I have to be breif so please forgive. I had neurological symptoms of celiac since childhood and by the time I was diagnosed over 40 years later I had no reflexes in my legs, I could barely walk because of ataxia, I was totally incontinent, and my brain fog was so bad at time I couldn't remember the names of simple things like a fork or who was president. The pain from GI problems was intense and constant and I lived off pills. I am now 4 years post diagnosis. Within the first few months the ataxia improved to the point that I could walk unaided, within 2 years I had reflexes again and bladder and partial bowel control and the brain fog has lifted totally although I still have some problems with short term memory. I have been left 4 years later with only mild ataxia and some residual nerve damage in the bowel area but for the most part I have healed. Nerves can repair themselves, it can take a long time but for some of us healing is possible. It may not be the 'oh my gosh' sort of healing that we have when the D finally stops but it can occur. Also please be aware that many children show a false negaive on testing. Do not assume if your DD comes back negative that you are in the clear. For a child especially, although this applies to some adults also (I was always blood test negative) the diet is the truest test.

[Guest nini]

you sound like me... I was very ill for years, one of my symptoms was losing feeling in my left leg, sometimes it was so bad my leg would collapse under me and I'd fall wherever I was (usually in public somewhere) my daughter was 3 by the time I was officially dx'ed, and she was having symptoms too and she was so afraid to eat because eating always made her tummy hurt. Plus she would get VERY cranky and irritable (the tantrums were worse than awful)... I had my daughter tested but the ped. gi didn't believe me even though I'd had positive blood test (my gi said the biopsy wasn't necessary with my blood test being so high and my symptoms being as severe as they were) dx was confirmed on me with positive dietary response... My daughters blood test was negative (found out later they DID NOT run the complete celiac panel) but false negatives are common in children. With the support of her pediatrician, we tried the diet (originally the trial was to be for 3 weeks) within 1 week we knew gluten was a problem with her and her ped. had no problem dx'ing her with gluten intolerance based on positive dietary response and genetic predisposition (me)

that is my abridged story. Before my official dx, I had previously tried the diet 4 years earlier but had my OB/GYN tell me I was basically crazy, it was all in my head and that the diet was bad for my unborn baby????????!!!!!!!!! WTH? I wish I could have been strong and listened to my gut instincts 4 years earlier and saved me and my daughter so much grief, but then, maybe I would still be doubting the dx.

[Electra]

she was so afraid to eat because eating always made her tummy hurt. Plus she would get VERY cranky and irritable (the tantrums were worse than awful)...

I'm sitting here right now almost crying!! You are decribing my 2 yr. old to a T!! Yesterday I loaded her up with Gluten and her face broke out in that darn rash and she also broke out in a few other places. Then she gets very red eyes and gets so sleepy and cranky. She falls asleep and then when she wakes up she is screaming bloody murder. It's almost like she's not even there or like she's having some kind of seizure. She flales her body about screaming as if someone is literally stabbing her and she's fighting to get away!! It takes her an hour sometimes to calm down and if you try to help her she gets even more irate!! She's not like this normally, so I guess I already have my diagnosis!! Sadly we both have Celiac Disease!! What a relief it is though to know that we can stop these horrible symptoms!! Man I can't wait to cut out the Gluten and claim our lives back!!

[Guest nini]

Yep, it sounds like it to me too... I used to sit on the floor by my daughter and just cry because I felt so helpless when she would flail around, kicking, hitting, biting, screaming (like she was having a seizure too) she wouldn't want to be held at all, after about an hour she'd collapse exhausted and sweaty and just say "sorry mommy I couldn't help it" she'd get blotchy hives all over her. Her bm's were awful... her poor bottom was always raw and bloody no matter what remedy I tried. When I was dx'ed with Celiac, I started feeding her what I was eating at home and I noticed she did better on the weekends when she was home with me, it was after she'd been at daycare (not even all day) and would eat there and within an hour of eating she'd have these tantrums. (they'd put her in time out which never worked)...

It was amazing to me when I started her on the diet full time (and I did get a Dr. note for daycare that we were doing a dietary trial) she became a different child within days... smiley, pleasant, not cranky at all...

I'm convinced that gluten is my daughter's problem... She's convinced too... She remembers what she felt like before going gluten-free and now she won't eat anything if I haven't approved it first.

[tarnalberry]

I would, if you can do this with your insurance, or if you're willing to pay for it out of pocket, suggest taking your daughter in - without waiting for the other doctor - to a dermatologist who can biopsy the rash looking for dermatitis herpetformis. You don't have to do this in a particular order, relative to blood tests, so if you can get her in sooner than a different doctor, do that, if it will help you feel better than just waiting.