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Frances03

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Frances03 Enthusiast

I am a 38 year old woman. Here is my list of symptoms.

At about 15 years old, have an episode of severe joint pain in my shoulders. So bad that I cannot lift my arms, or hold them up if someone else lifts them. Am taken to dr's and parents are told I have arthritis. Am put on ibuprofin type drugs. Finally it goes away, but it comes back occasionally still today, and is always in matching joints, like both shoulders, both hips, both knees, or wrists and finger joints.

As a teen, start having migraine headaches with many symptoms leading up to headache:numbness, nausea, nonsense speaking, seeing spots and flashes, etc.

I have had a rash on my scalp for at least 15 years, it itches like mad, and sometimes it gets blisters and scabs. I have been told to try dandruff shampoo, prescription dandruff shampoo, and some drug, never worked, so I just live with it.

I have hashimoto's thyroiditis, complete with enlarged thyroid, and thyroid nodule, they have said to wait 3 months and get the nodule checked again with ultrasound. I take synthroid and have for 10 years.

I'm exhausted all the time and haven't had any energy in probably 10 years.

10 years ago I started having seizures, was diagnosed with temporal lobe epilepsy. Used as a guinnea pig for various drugs, which all made the seizures worse, so finally quit the drugs and said enough is enough, so I live with about 1 seizure a month. This results in complete memory malfunction for me, so anything that happened 2 weeks ago I cannot remember unless it was something that really stood out and made it's mark. Literally, I dont "make" memories, so my mind is a blank on most happenings for the last 10 years.

When pregnant, I am diagnosed with hyperemesis gravidarum, which is a severe "morning sickness", in which you vomit nearly constantly and end up hospitalized and on iv's and more. I've had 4 miscarriages, all unexplained. One was after being hospitalized, having a picc line and being fed tpn thru my line, and various drugs to try to stop the vomiting. Lost that baby at 12 1/2 weeks. The other 3 were earlier, in the first trimester.

Now on to the bowel problems. I have chronic constipation type issues. Even if I go EVERY DAY, it is still nearly impossible to pass. I've been on fiber(metamucil) for 8 years and havent missed a dose. Still, I've had 2 anal fissures, plus surgery to repair. I feel bloated all the time, very gassy all the time, and always have trouble going to the bathroom. mixed in with this, I sometimes get symptoms of massive gas and explosive bowels after consuming what I THOUGHT was milk but I'm not sure. I almost look forward to this tho, because at least it means everything is going to come out when I use the bathroom. Otherwise I walk around feeling like it's still in there. Also, 8 years ago I gained 30 pounds in one month for NO reason, and I have never lost it. They assumed it was from the prozac I was on for post partum depression. I went off it immediately, was only on it for one month. But I cannot lose the weight at all.

I am also on Vitamin D supplements of 150,000 iu's 3 times a week as my Vitamin D is low, tho no one has ever thought to figure out WHY.

I have high cholesterol at my age, and am told to take a drug to lower it.

Am diagnosed as adult ADD and given Strattera which is also supposed to help my focus due to the seizures. Never had issues with ADD as a child!

I am diagnosed with lupus and put on plaquenil and prescription naproxen. Don't feel I really have lupus, so I've stopped those meds.

Have various skin rashes including constantly red cheeks, constant itching, itchy bumps on elbows.

Suffer from frequent sores in mouth and nose.

Also have had infertility for which no cause can be found. Tried constantly for 2 years to get pregnant with child I lost in 2nd trimester.

Sometimes I am starving all the time, other times I am not hungry and can go an entire day without even thinking about food.

Constant swollen nasal passages, use nasal steroid spray Nasonex. Oh also had severe asthma as a child.

Okay now this sounds like I am a hypochondriac but I'm not. usually I try to ingore or live with all this, but I am so TIRED of feeling horrible all the time, I am not going to stop looking for answers until I find something. Where I Live, the doctors are horrible and it's a small town, and I have yet to find one that knows what they are doing. I just got the celiac panel blood draw on Monday and I'm waiting on the results. I'd really love for them to say "they are all positive" so I could at least do something to feel better, but I am SURE it's going to come back that they are all normal because that is what happens with me. I am so tired of being put on this drug and that drug and no one ever figures out the actual problem. Does any of this sound like celiac to you? Thanks.


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Frances03 Enthusiast

I forgot to add a couple things. I crave ice and can eat a whole bag in a couple days. I eat ice all day long. I can't help it. I just have to have it. Also I have had issues with pencil thin stools, and I have acid reflux all the time. My 9 year old is also having bowel problems. He goes to have a bm about 4 times a day and sometimes has what he likes to call "poopy toots" where he has to change his underwear because he thought he was going to toot and it was the runs. This happens intermittently, sometimes a couple times in one day and other times not for a few weeks. He also gets constipated.

ang1e0251 Contributor

Your symptoms do sound like you should be testing for celiac disease. The ice chewing can be a sign of low iron. That also would be consistant with celiac disease. Did you get your blood tests back yet?

Frances03 Enthusiast

Yes I did, I got some of them anyway. I posted them under a separate post. It looks like I have 2 positives but I haven't heard from any doctor to confirm.

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    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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