Celiac? Gluten Intolerance? Lyme Disease? H Pylori?

[mazzy]

good morning, everyone. i'm new to the forum. i've been lurking for the past few weeks before deciding to sign up this morning. i really would like to know what everyone thinks because at this point, i think i'm driving myself nuts.

it's important to know that i've never truly been healthy. i was born allergic to soy but it took doctors/my parents roughly a year to figure it out. so, i was very lethargic, projectile vomiting daily & scream constantly. after they figured that out, i was diagnosed with ITP (extremely rare blood disorder) when i was about two years old. this involved extremely strong steroid treatment. during my childhood & teen years, i became allergic to seafood & developed rashes from strawberries & tomatoes. although i'm still extremely allergic to seafood, the tomato/strawberry problem has resolved - i think. i was getting pneumonia & bronchitis sometimes multiple times a year, constant sinus infections (6-10 a year) which turned into sinusitis, got measles & mumps, eczema, dermatitis & came up positive for epstein barr when i was about 9.

i got mono at 15, 22 & 24 which i've heard is absolutely absurd. i had headaches daily in high school. i had a horrendous, painful rash which my doctor thought was shingles but it wasn't. it covered my entire body - including the soles of my feet & palms. this came & went several times a year for about three years. i was diagnosed with lyme disease when i was 22 by the family doctor using the western blot. whether it be my igg or my igm - one of them is positive, one of them is negative. the only reason why i haven't paid much attention is because just like celiac, the tests are not accurate at all but based on the symptoms i've had, i thought that had to be the answer. i underwent treatment when i was diagnosed three years ago & i got so, so sick. i've gotten gradually worse not better & i don't know what it is or it isn't.

my stomach problems have got to be my main complaint in the last two years. up until going on a gluten free diet, i was experiencing horrible pain & nausea literally every time i ate. i've had to cut back to only one meal a day because i couldn't eat at work & function. i developed motion sickness which started occasionally & i learned i had to avoid drinking/eating for about 2-3 hours before getting in the car. it became so bad it didn't matter whether i ate or not - i still got sick. i got diagnosed with h pylori & acid reflux a year ago & did treatment for that as well but it didn't work. i felt better for a few weeks & then the pain came right back. i was uninsured at the time so i couldn't do too much. recently i got tested again & i'm still positive for it. over the past year, i've lost about fifty lbs & i'm starting to get to the point where i can't afford to lose much more. i'm down to 117 lbs. my primary care doctor tested me for celiac & i came back negative. the pain got so bad a few weeks ago that i, by accident, started a gluten free diet. i was only eating rice, broth & avocado & i finally had relief. so i've been continuing with it & i've only seen improvement. i had gluten once on purpose & once by accident ... i definitely knew i had some kind of a problem with celiac. within five minutes, i felt my stomach expand against my rib cage. the pain & intense irritation came back.

a few weeks later, i visited an infectious disease doctor to address my lyme disease. i showed him all of my medical records. he said he doesn't think i have lyme, h pylori or ever had mono at all - let alone 3 times. he doesn't think any of the symptoms i have are indicative of lyme. he's leaning heavily on celiac but i tested negative... i have reactive bands for lyme disease & my h pylori levels are elevated... i don't know if this doctor is an idiot or the only one who knows what's going on. he took 13 vials of blood from me & he's testing me for celiac (which won't come back right - i was already gluten free by the time he tested me. i found out he was testing me after they took the blood), parvo, lupus, rheumatoid arthritis, several lyme tests, all the co-infections of lyme & a slew of other things. 13 vials is a lot of blood, i can tell you that. i won't have the results for another 2 weeks & i won't see him for another 3 weeks. seeing a holistic doctor as well & he believes i have lyme but he's leaning more towards leaky gut syndrome.

i'm at a loss right now because i don't know what to do or NOT do with myself.

my main symptoms right now are brain fog, balance/coordination problems, migraines (abnormal MRI with "misfirings" in the white matter/nerve function - possible diagnosis is lyme, infectious disease doctor says it's normal?), weight loss, pinched nerve (developed 3 weeks ago, sent me to the ER because of chest pain/arm tingling - was severely dehydrated but ekg was fine. went away for a week, came back worse with shooting pain up my neck, across my chest & down the other arm. the medication is making me too sick to take & it's been steady now for over a week), extreme fatigue, motion sickness, sleep disturbances, anxiety, vision changes, sound sensitivity, memory loss, joint swelling.

since i've went gluten free, i've been having some bowel issues. i've been suffering from loose stool which is NEVER a problem for me. that's the weird part.. all of these stomach problems & i never had bowel issues. also really uncommon for me, i'm breaking out very bad. i didn't even have pimples when i was going through puberty. my body has been craving water since i stopped gluten whereas it made me nauseous before.

i'm sorry this is a novel but i seriously am at a loss for what to do. every doctor i see is telling me something else & i've become so sick that i just need ONE answer - not ten. i've been in & out of the ER since september for various things & i don't see myself getting better if nothing changes.

if anyone has any suggestions, ideas, advice - please let me know. i posted this because i want to know if any or all of this could be from celiac or if anyone else on here has lyme or h pylori. please help if you can.

thank you to everyone who took the time to read this!

[mommida]

There have been a few here who thought they had Celiac and then found out they had lyme. I seem to remember one girl who had H. Ployri and Lyme too.

ITP is considered auto-immune. If you have one auto-immune disease, it is very likely to get another auto-immune disease. There have been numerous studies that show a gluten free diet is helpful for auto-immune disease patients.

Celiacs have a higher rate of H.Ployri and other things. i.e. TB

The doctor needs to be aware that you have been on a gluten free diet before the Celiac panel. You could try a genetic test for Celiac/gluten sensitvity genes while on the gluten free diet.

Before diagnoses and starting a gluten free diet, I had chicken pox twice ~that is not supposed to be possible either.

[Muffy]

We have a history of similair symptoms...

I found out I was celiac by accident while experimenting with ways to stop having migrianes and dizziness all the time. I have never been tested and won't be not only because it is too late (already gluten-free) but because I have had a lot of tests for allergies that were not accurate so I don't have a lot of faith in them anyway.

If constipation was a gluten symptom or of if you are eating more fruits/veggies than your were before going gluten-free that might explain the looser stools as well.

Good Luck, and trust your gut

There have been a few here who thought they had Celiac and then found out they had lyme. I seem to remember one girl who had H. Ployri and Lyme too.

ITP is considered auto-immune. If you have one auto-immune disease, it is very likely to get another auto-immune disease. There have been numerous studies that show a gluten free diet is helpful for auto-immune disease patients.

Celiacs have a higher rate of H.Ployri and other things. i.e. TB

The doctor needs to be aware that you have been on a gluten free diet before the Celiac panel. You could try a genetic test for Celiac/gluten sensitvity genes while on the gluten free diet.

Before diagnoses and starting a gluten free diet, I had chicken pox twice ~that is not supposed to be possible either.

[drued]

You have been bombarded with steroids and antibiotics nearly all your life. No wonder your system is such a mess. Try the Paleo diet (which is free of most allergens) for three months to see if there is a difference. Add a good probiotic daily (one that does not include L.Casei)-- this is very important. Due to the extensive nature of your treatments, no doubt you will need longer than three months to see any startling change, but you never know. Good luck.

[Evangeline]

The standard blood test that doctors give patients to detirmine if they have Celiac Disease has an accuracy of about 60%. 40% of the time, the test is inaccurate. I suggest you get a stool test from www.EnteroLab.com (95% accuracy) for about $99.

Also, you sound like you might have hypothyroidism. Do you frequently feel chilly?

The thyroid tests the doctors give patients only catch EXTREME cases and even still they don't accurately diagnose all the time. I would have you go on a goitrogenic-free diet -- foods that shut down the thyroid and cause a person to feel fatigued, imbaalanced, sensitive to cold, foggy-brained, sleepy... the lists go on and on.

Common goitrogens are:

Cruciferous vegetables including:

Broccoli

Brussel sprouts

Cabbage

Bok Choi

Canola Oil

Cauliflower

Kale

Kohlrabi

Mustard

Rutabaga

Turnips

Millet

Corn

Other food items:

Peaches

Peanuts

Radishes

Soybean and soy products, including tofu

Spinach

Strawberries

If that did not work, I would tell you to stop eating soy, too. And I would get you to eat a VERY SIMPLE DIET. Plain rice, olives, squash, salt, green salad (with a simple dressing of rice vinegar and olive oil), watermelon, eggs. I would have you eat as simply as possible and see if your symptoms improved after a week or two. You very well may have another food sensitivity since that is common in Celiac suffers. You could be sensitive to: Soy (and soy lecithin), nightshade vegetables (potato, tomato, eggplant, all peppers and hot spices). You could be sensitive to casein in dairy. Also corn is another common sensitivity that causes symptoms similar to yours.

[sa1937]

The standard blood test that doctors give patients to detirmine if they have Celiac Disease has an accuracy of about 60%. 40% of the time, the test is inaccurate.

Just curious...where did you hear or read that?