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I Know I Have This...
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2 posts in this topic

Hello All, new here. I will try to keep this as short and to the point as I can... but I have a lot of things to say and vent about.

I am 37 and the mother of a child with PKU (in inborn error of metabolism, cannot use excess amino acid in protein).

As a child I had bad headaches, diarrhea, mood swings etc. The doctors blamed it on my parents divorce. Then they said a mild case of scoliosis...

In my teens and 20's I had times of pain, body pain, but not muscle pain... Again doctors said stress. I have always, since the time I began had monster pain with my periods. I even passed out a couple of times with them. They said they would get better after I had a child, they did not, they got worse. In the meantime my over all body pain got worse, diarrhea, stomach cramps, tingling you name it.

I went thought Mayo Clinic, mostly for female trouble but also for the pain I was in. I had been in several car wrecks etc. I went from specialist to specialist, they could not find anything wrong with me, said it was from old injuries. They suggested cortisone shots for when I really needed them. I said No thanks.

I have been to countless doctors. No one can find out what is wrong with me. Some of them pat me on the head and say stress, others give me antidepressants, which made my skin crawl and depressed me to the point of curling into a fetal postition and staring at walls.

Some people tell me its Fibromyalgia, it isnt. Then someone told me it was candidasis. I went on a diet, no flour and no other things either. The symptoms did not fit but I did it anyway and within several days, I felt like a new person. But this yeast diet is very very restrictive and I got too thin on it so I switched to low carb, avoiding flour etc yet. Then they came out with low carb breads etc and I began to put them back into my diet and within 2 weeks was back to the way I had been. Diarrhea, stomach pain, tingling, numbness, heart jumping around, nearly incapacitated with pain, bone pain, not muscle. The only symptom I dont have is a rash, but I had one last year, all over my body. The doctor said infection....

When I eat fat, I get sick, when I drink a couple of beers, I get very very sick, feels like the worse case of flu I have ever had.

A friend said to me, have you been tested for celiac? I had heard of people who could not have gluten thought my daughters disease... she said her cousin had it and she had same symptoms I do. My aunt sent me an article on it. I went online and really really researched it and a light went on in me.

I have absolutely no faith in doctors. I know it can take up to 11 years to get this diagnoses and I thought why even bother? I have been on a gluten free diet for 4 days now and I feel better. A lot better. Not completely well but better than I have since I put flour back in my diet. ANd every day I get a little bit better. And now that I am not eating any gluten, will the testing even work? Or will it, like every other thing they have done to me come up normal and negative? Do I need to be tested? How do you get a doctor to listen to you? I am a forceful person... but they have never, not once helped me. To tell you the truth, I loathe doctors....

I saw the list of tests... I am going to copy it and try to get the courage to insist that my latest doctor do them. But if I am gluten free, will they still be able to tell me yes you have this? Because I am as certain as I can be that I do. And if I continue to feel better, do I really need a doc tell me yes you do have it?

If anyone can help me, I would very much appreciate it. I probably dont have to tell any of you what this does to your mind and spirit. To be in pain, afraid to eat because you may have an attack and have to be sick in a public restroom, not being able to do the things you want because you hurt so badly. I have withdrawn very far into myself and felt hopeless for so long...

Thank you for listening.

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Four days gluten free won't skew the tests but if you go for very long it might. Given all the symptoms you've described I would think your doctor would quickly agree to the blood tests. If they're positive you could skip the biopsy if you wanted, which probably would take a while to schedule. Or you can just skip all the tests and go gluten-free. It all depends on how important it is to you to have an official diagnosis.

I know you read it takes 11 years to get diagnosed but that doesn't mean 11 years from this point for you. Think of it, it's already taken you 37 years so you're already way over the average.

richard

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    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
    • I think that we have to remember that celiacs often develop intolerances due to our  damaged guts.  Our guts do not ncessarily heal either (usually adults) for  a variety of reasons even if their symptoms improve (see links below).   Nuts are just plain hard to digest.   I can not tolerate almonds, but can handle walnuts and cashews in small amounts.  I can eat peanuts too, but resort to Peanutbutter after a Glutening as it is easier to digest (maybe I have to learn to chew better!  😀)  My nut symptoms have  nothing to do with gluten as I have purchased certified gluten-free nuts and suffered with the same symptoms.  .   https://www.verywell.com/celiac-disease-when-will-your-small-intestine-recover-562341 http://www.cureceliacdisease.org/treatment/ http://www.ncbi.nlm.nih.gov/pubmed/23936873 i call the manufacturer when I suspect the manufacturer is sharing the line or if I just want to know.  I bought some Black English walnuts and called the company.  Those are the only nuts they process and they do not have any flavored nuts.   if you really want to test your theory out, buy some nuts from Nuts.com (certified gluten-free).   See if you get a reaction or ask your GI to retest your antibodies (which should be done annually anyway).   I just hate to have Planters get a bum rap when you do not really know for sure.......😥    
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