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SunnyJB

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SunnyJB Newbie

Hi. I am Sunshyne. I'm 29 and have been searching for an answer to what is wrong with me for over 10 years. I have been told I have:

arthritis

fibromyalgia

periodic leg movement disorder (sleep issue... looks like seizures)

chronic fatigue

asthma

anemia

IBS

Anxiety

Depression

I have been drugged to no avail. Nothing helps EVER. This past bout is going on 7 days strong of left side of my abdomen pain bein so bad that I vomit from the pain. I went to my dr (military family... ) and he gave me MOBIC!!! In the paper work it even says not to use if you have a history of bowel issues. COME ON!

They tend to give me flexoril for "spasms" and Bentyl for IBS... nothing works

I have also had 5 miscarriages. I have two daughters and was in the hospital at least twice a month for Iv drip with the second one. They call it hypermesis.

I am trying so hard to not give up on me... but its rough.

I have scheduled and canceled the intestinal probe three times, because of anxiety issues.

I am in the process of researching the gluten free way of life. My oldest daughter is ADHD so it should her her as well, and my youngest has juvenile rheumatoid arthritis.

Thanks if you read this.


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KathiSharpe Apprentice

Hi Sunshyne!

What set me on this journey a second time (after being told a few years back that I do NOT have celiac) is a myriad of symptoms all related to hormones - thyroid and female mostly.

A friend who has PCOS, and whose kids have celiac told me that her doctor put her on a gluten-free diet, citing definite links between PCOS and gluten intolerance. It's apparently helping, tho eating gluten-free won't cure it by any means.

PCOS is polycystic ovarian syndrome - like celiac, it's often missed by doctors. Symptoms vary from woman to woman - and many women dismiss them as "normal" or the doc says, "it's just you to be this way" - but they include monthly complications, not ovulating, difficulty conceiving, miscarriage, and often, insulin resistance. When I was finally diagnosed my GYN said that any woman with a history of miscarriage (where they don't know the cause) should be evaluated for PCOS.

Given the gluten link I thought I'd mention it.

The hyperemesis during pregnancy (that's vomiting a lot, right?) - did that involve headaches too? I had that with both of mine so bad that late term abortion was recommended (and doctors were bitten by mad bear mama here <_< ).

SunnyJB Newbie
Hi Sunshyne!

What set me on this journey a second time (after being told a few years back that I do NOT have celiac) is a myriad of symptoms all related to hormones - thyroid and female mostly.

A friend who has PCOS, and whose kids have celiac told me that her doctor put her on a gluten-free diet, citing definite links between PCOS and gluten intolerance. It's apparently helping, tho eating gluten-free won't cure it by any means.

PCOS is polycystic ovarian syndrome - like celiac, it's often missed by doctors. Symptoms vary from woman to woman - and many women dismiss them as "normal" or the doc says, "it's just you to be this way" - but they include monthly complications, not ovulating, difficulty conceiving, miscarriage, and often, insulin resistance. When I was finally diagnosed my GYN said that any woman with a history of miscarriage (where they don't know the cause) should be evaluated for PCOS.

Given the gluten link I thought I'd mention it.

The hyperemesis during pregnancy (that's vomiting a lot, right?) - did that involve headaches too? I had that with both of mine so bad that late term abortion was recommended (and doctors were bitten by mad bear mama here <_< ).

missed one... I was dx with PCOS at age 15

SunnyJB Newbie

I thought I had PCOS on my list. Was dx'd with that at age 15.

Tiff Apprentice

Hi. I am Sunshyne. I'm 29 and have been searching for an answer to what is wrong with me for over 10 years. I have been told I have:

arthritis

fibromyalgia

periodic leg movement disorder (sleep issue... looks like seizures)

chronic fatigue

asthma

anemia

IBS

Anxiety

Depression

I have been drugged to no avail. Nothing helps EVER. This past bout is going on 7 days strong of left side of my abdomen pain bein so bad that I vomit from the pain. I went to my dr (military family... ) and he gave me MOBIC!!! In the paper work it even says not to use if you have a history of bowel issues. COME ON!

They tend to give me flexoril for "spasms" and Bentyl for IBS... nothing works

I have also had 5 miscarriages. I have two daughters and was in the hospital at least twice a month for Iv drip with the second one. They call it hypermesis.

I am trying so hard to not give up on me... but its rough.

I have scheduled and canceled the intestinal probe three times, because of anxiety issues.

I am in the process of researching the gluten free way of life. My oldest daughter is ADHD so it should her her as well, and my youngest has juvenile rheumatoid arthritis.

Thanks if you read this.

Hello Sunshine,

Welcome !!

I just want to let you know that this forum is a great start for you. There are alot of people here who can give you great advice, you just have to be patient.

I am also from a military family. I am 30 years old and I have a 22 month old daughter. I have been trying to figure out what is going on with me for the last 8 months. I have not been dealing with symptoms as long as you have, but trust me I have been through lots and lots of pain throughout my entire body. I have been diagnosed with Vitamin D deficiency, which took forever for doctors to find. I recommend you get your vitamins and hormones checked for possible imbalances! Doctors never told me to go gluten free I just found this website and figured what the heck and gave it a try because its the only thing that I can test on my own. (Besides the entrolab which I haven't done yet)

I have been gluten free for 2 months now, and although I do feel better I am nowhere near my old self. I have aches and pains everyday, but they are not as strong as they used to be. From what I have read on this forum, if you are truly gluten intolerant or have celiac it can take up to 2 years for your body to fully recover. I have not given up and I am going to continue the diet. And am also seeing a homeopathic doctor, which I am paying for out of pocket (something we can't afford, but I really need the help), and to be honest all of the natural supplements aren't really helping so far. But like I said I am hopeful that one day a doctor will be able to correctly diagnose me. I just want you to know that I am here to support you because we are all in the same boat here. Were all trying to figure out what is going on with our bodies. I wish you the best of luck and I hope you find some great advice here.

TIFFANY

SunnyJB Newbie

Thanks Tiff.

I am taking a precursory action, and journaling EVERYTHING I put into my mouth, and every syptom I have ... I'm going to keep doing it as long as it takes to get a dr to test me.

I am going to a new PCM on Wed, with a list of my issues, and a weeks worth of food/symptom journaling in my hand.

I don't think he will make light of it.

My grandpa died of colon cancer and my mom has had polyps removed three times... last time they were precancerous. So I will tell him that too.

Until then I will continue to eat everything as normal and just live with the pain. I HAVE to have a diagnosis or my husband will not support the switch to gluten free "just because you *think* it will help"

He doesn't understand. But... whatever it takes to make me FEEL better, I am willing to do at this point, and if means discord in my marriage, so be it.

Sorry, went off!

Good luck on your search for help Tiff!!

ranger Enthusiast

Please don't be so nervous about the endo- it's literally a piece of cake. But, even if you test negative for celiac ( which many have), try the gluten free diet. If your husband balks at first, when he sees the improvement in your symptoms, he'll come around. At least, most seem to. It was confusing to me at first, so I can imagine how confusing it is to a non-celiac. You'll have to learn how to deal with a "mixed" household, but it can be done. Let us know how the endo goes, but, by all means take it and no matter what the results go gluten free.. Good luck


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    • Wends
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But I want to knos if it would be enough to do damage.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. 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But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. 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    • Mrs Wolfe
      I appreciate the information and links.  
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