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New Here, Feeling Miserable
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Hi everyone. I found this site during a desperate web search for resources on gluten allergies/sensitivities. I am in need of answers and reassurance that I'm not losing my mind! 

 

My name is Sarah, I'm a 30 year old married mommy of 2. I work full time as a Registered Nurse on a cardiac intensive care unit. My life is busy busy busy and always hectic to say the least!

 

Last fall, I started having a lot of digestion issues, but I chalked it up to poor eating and stress. I've have intermittent bouts of nausea/dry heaving, mostly in the mornings, for years. For a long time, I thought I had gall bladder issues, but I've had that route checked out at least 3 times, and nothing ever comes back abnormal (ie: no gall stones, sludge, inflammation, etc.). October of last year, I started breaking out in hives for no apparent reason. I had made no changes in my diet, no new skin products, no new laundry products, nothing. I just woke up one morning itching like crazy, looked on my stomach, and I was covered in hives. That went on for about 2 weeks, just random hive outbreaks that I couldn't get rid of with anything OTC, so I went to my primary doctor. They thought it could be a reaction an antihypertensive medication that I was on (ACE inhibitor), but I had literally been on that medication for over 10 years. They changed my meds around, gave me Rx strength antihistamines, and told me to continue taking Zyrtec everyday. The hives cleared up and I didn't have any problems until after the start of the new year. 

 

Since January, I have had constant diarrhea. Within 30-60 minutes of eating, I am nauseous and in the bathroom. I started to notice it was a lot worse after I would eat things with bread, like sandwiches, and especially pizza. Pizza is the absolute WORST. I have taken enough Immodium in the past 3 months to clog a person up for a year, yet I was still having diarrhea. The end of February/beginning of March, I broke out in another rash that started on my legs and spread to my arms. The itching was so intense, I literally did not sleep for days on end because I could not stop scratching. I tried everything I could think of, including the Rx antihistamines I had been given in October, and they didn't even help. I scratched my skin until I had sores on my legs and arms, it was awful. I got in with my doc after a week of going crazy from itching, and she referred me to a dermatologist. The dermatologist said she was pretty sure I have follicular eczema, gave me Rx strength hydrocortizone cream and lotion, and told me to up my Zyrtec to 2x daily. Finally, after several days, I started to get relief from the skin issues. 

 

However, the GI issues have still remained. I generally feel miserable all the time. My gut hurts continuously. I feel bloated and swollen all the time. I'm gassy all the time. I have horrible indigestion and acid reflux (I'm on Prilosec and Zantac). I'm tired of being tired and feeling like crap (ha!) all the time.

 

2 weeks ago, I decided to go gluten-free. I just completely cut all gluten out of my diet. Within the first week, I felt 1000 times better, and actually lost 4.5 lbs in 5 days (which is good, I need to lose weight). Like a fool, after a week, my kids talked me into ordering pizza one night, and I ate a piece of it. Laziness on my part for not making myself something "clean". Within an hour, I was in the bathroom with the worst stomach cramps and diarrhea. I was nauseous all night after that. I vowed then that I was never eating gluten again! Bold statement, I know. Fast forward to tonight, a week later, and I stupidly did it again. And once again, within an hour of eating, I was in the bathroom. And I am so nauseous and dry heaving, I had to run to the store to buy Tums and I grabbed some Probiotics to see if that would help too. I am currently in misery and it's my own stupid fault! I guess I just needed to be absolutely sure.

 

I know this is long, I'm trying to wrap up...hang with me!

 

My biggest issue is trying to figure out how to approach this subject with my doctor. I love my doctor, I trust her opinion, we have a great relationship. But I sometimes feel like she must think I'm a hypochondriac with all of the health issues I've had at such a young age. I really, truly, deep down think that a lot of my issues may stem from this issue with Gluten. I'm going to call her office tomorrow and see if I can get an appointment with her soon to discuss all this and see if she will refer me to a GI specialist. I guess I have to start somewhere.

 

If you made it this far, thanks for reading my story, and any insight anyone can give me is greatly appreciated. I just want to feel good and I'm hoping that this is a step in the right direction!

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Welcome to the forum and you've come to the right place for questions about gluten intolerance! 

 

It sounds like your symptoms are lining up strongly enough with gluten consumption to warrant a test. The unfortunate news is you have to continue eating gluten throughout testing for celiac to maintain antibody levels and damage in the small intestine. So if you're considering getting testing done, don't cut it out completely. You can cut it down to half a piece of bread or a gluten dessert (cookie, cracker, brownie, something of that size) every other day if the symptoms are disturbing your life. There are people on this forum who can tell you what types of blood tests to request, and what to look for as the first step. Usually your primary care doctor can order the tests but they might refer you to the GI depending on the availability of testing in your area (urban is a usually easier than rural). 

A diagnosis will certainly help with the slip ups because, if it is celiac disease, then it can mess up your body completely to continue to eat gluten. And this whole thing can just turn itself on at any moment so you're totally justified in wanting to get information after a year of issues (aka not a hypochondriac).

 

For future steps, if your blood tests come back positive, then you'll definitely get referred to a GI to do an endoscopy to biopsy your small intestine to confirm the diagnosis. If it comes back positive, you should definitely get your kids tested (this is genetically linked) and encourage all 1st degree relatives (siblings, parents) to also get tested. If your tests come back negative even with a full gluten challenge, you might still be "non-celiac's gluten intolerant." Even if all tests come back negative, your body is more accurate. If cutting out gluten makes you feel better, then do it. The testing just helps with insurance and as a way to make sure you stick to it and have everyone who provides you with food stick to it. 

 

Let us know if you have any other questions!

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Sounds like you've figured out your own problem, like a huge number of people with gluten issues. Your reactions scream gluten intolerance or likely celiac. It is no secret that the medical community is far behind in diagnosis of celiac. It can be important to know if you are gluten-intolerant or have celiac disease...however you need to have gluten in your system to test accurately for celiac, so call your doctor ASAP, tell her your find & get blood test immediately. Dont worry about what your doctor might think...celiac is one of those diseases that requires you to be your own advocate. I discovered my baby's celiac after 2 months of misdiagnosis by gi docs thanks to this website & it saved his life!

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Hi Sarah, and welcome to the forum!

 

You have come to the right place for information and friendly support!  Hopefully your doctor will move quickly to get you tested.

 

This forum is full of people who have struggled for YEARS with misdiagnoses before finally figuring out celiac was the cause of their problems.  Your short gluten-free trial has already told you a lot, you feel better when you do not eat it!

 

But please, as EmiPark said, keep eating gluten while you are in the midst of testing.  You won't produce antibodies if you are not eating gluten, and the antibody level can drop quickly when you stop.

 

Keep us posted how things go with your doc, and keep asking questions!  Be sure she tests for these things:

 

Total Serum IgA

Deamidated Gliadin Peptides - (2 tests... DGP IgA and DGP IgG)

Endomysial Antibodies (anti-EMA)

Tissue Transglutaminase antibodies (IgA is usual version, I'd ask for IgG too)

 

 

 

 

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Welcome.  You have found a great site.  I too have suffered for too long w/o a diagnosis.  I had an aunt that died at the age of 38 with Celiac colon cancer, never diagnosed or thought of until her daughter was diagnosed with Celiac.  In addition 3 of my aunt's siblings died from colon cancer the oldest being 64.  None of them had the skin rash.  My cousin was diagnosed 6 years ago via EGD biopsy and she did have the rash on her scalp.  

 

I've had gut issues and rashes for many years.  When I broke out in Feb of 2012 with a severe rash. . . I started searching for an answer and I found it.  This was one of the first sites that I was able to see 'real' people with pictures of their rashes.  There is a area out here that addresses Dermatitis Herpetiformis, in depth.  It will really help you to connect with members.  My blood tests were negative but that didn't stop me.  My cousin's blood test were negative too.  She became so iron deficient that she required infusions to recover.  She was told to notify all of her blood relatives by her GI.  She cannot get one bit cross contaminated without what you have described happening to her.  Good luck, hang in there and there is a resolution.  Gluten free, forever!

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I wonder if you might have water weight.  Oh, high blood pressure probably so!    My water wieight is due to adrenal gland not being able to make cortisol. My adrenals had given out.   At any rate I saw an osteopathic doctor a few days back which is trained in Functional Medicine.  The nurse practiitioner and doctor gave me an herbal mix to support the adrenals.  I am sure my adrenal glands have kicked back on.  I woke up during the night and felt them going.  Wow!  They expect that I will lose weight, and I wonder if it will be dramatic.  I once lost 30 lbs in a week, so I know what it can mean.  Whatever your problems end up to be work on improving your diet and healing your illness from the roots.  I hope you will be able to slow down a little.  I know that is tough with a job and little ones.

 

You can tell if your adrenals are taxed by orthostatic blood pressure.  As I understand if you pressure goes down when you stand, your adrenals are having trouble.

 

Diana

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HI,

 

If I were you I'd print out this thread and show it to your doctor.  You wrote a pretty darn good description of your symptoms and how gluten affected them.  So let your doctor know so the can start from the same information.

 

DH (dermatitis herpetiformis) is a skin rash that only people with celiac disease get.  They test for it by taking a biopsy sample of the skin next (not in) a lesion and check it for IgA antibodies.  Some people with DH find that limiting or removing iodine from the diet while they are flaring helps resolve symptoms faster.  A dermatologist cna take a biopsy for DH.  If you have DH, then you have celiac disease, regardless of any other test results being positive or negative. Check the dermatitis herpetiformis section of the forum for more info.

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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