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I Need A Little Help! Thank You!

brett31em

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brett31em Rookie
brett31em
Posted

Okay, so I am a 21 year old female college student with no medical problems.

--As a child I had a ton of ear infections and was on antibiotics quite a bit (don't know if this is relevant, but I'm including it anyways).

-- Seven months ago I went off of the birth control pill, which I was on for six months, because a ton of weird things started happening to me: face rash, abdominal bloating and distention, hair falling out, mood swings, cramps, weight gain

--For a few years now, I have had a rash on the inside of my elbow that comes and goes. Sometimes it just looks like eczema, other times it's a bunch of little red bumps that are itchy, but not painful or blistery. It is in a perfect circle. Sometimes a few little bumps show up on my other arm, in the same spot, but not in a perfect circle.

--Ever since gaining the weight on the birth control pill I have been having problems with bloating, gas, and abdominal distention. There doesn't seem to be any rhyme or reason to when it occurs, just about all the time, and worse during my menstrual cycle.

--I have a RAVENOUS appetite. I eat more than my boyfriend! I can eat a bowl of pasta and meatballs and be hungry 1.5 hours later.

--If I let myself get too hungry, my stomach blows up with air.

--I am deficient in Vitamin D per my last physical (the only vitamin he tested)

--I have pretty severe anxiety about school, work, family, etc. Sometimes it just seems irrational.

So I have been on a gluten free diet due to suspicion of Celiacs (by a dietitian) for about two weeks and the bloating/distention seemed to be better for a few days, but now that I am approaching my menstrual cycle, I feel HUGE again. But, my appetite seems to really be under control. Based on all this, what do you guys think? Celiacs? Any other suggestions? Need any more info?

Thank you all SO MUCH.

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Skylark Collaborator
Skylark
Posted

Hi there.

It's hard to say. Have you been tested for celiac? You should be able to get a celiac panel based on the vitamin deficiency and the bloating. Keep eating gluten until you get the tests, because if you're gluten-free they'll be negative.

By the way, I had that perfect circle rash you describe on the inside of my elbow many years back. It's really weird, huh? I was afraid I had Lyme disease but my doctor just diagnosed it as atopic dermatitis and a little cortisol cleared it up.

ravenwoodglass Mentor
ravenwoodglass
Posted

The rashes you are describing on the inside of your elbows sound like DH. That would be a common place for it. I would get it there and also on the backs of my knees for years. A home test for DH is to get some topical iodine solution, like the stuff you would put on a wound, put it on your skin near where you usually get the rash and cover it with a bandaid. If it is DH you will develop a the rash within a day or two or possibly sooner. You could also go to a derm and ask them to biopsy the skin next to a rash while it is active. Specifically ask them to look for DH as a special test needs to done in the lab. A diagnosis of DH is a diagnosis of celiac.

You symptoms are also suggestive of celiac. You need to be on a full gluten diet for testing so if you are going to have tests done make sure you are still eating gluten. If you have been gluten free you need to go back to gluten for 2 to 3 months for any chance of a correct blood test or biopsy. Even then the tests can be a false negative so after you are done with testing give the diet a good strict try for a couple of months to see if it helps.

brett31em Rookie
brett31em
Posted
  • Author

Thank you for your replies! From my research, I guess I am just wondering what the tests really will tell me...I've been reading all about false negatives, not being certain, etc.

mushroom Proficient
mushroom
Posted

Yes, there is about a 20% false negative rate on the testing, but you won't know until you try. It sounds like a test result would be important to you, so you should probably stay on gluten and get it done. If it is negative, then you can try the diet and see if it works for you.

P.S. I have not heard of false negatives on the DH testing if it is done correctly, i.e., biopsy immediately adjacent to the lesion.

brett31em Rookie
brett31em
Posted
  • Author

Thanks again everyone! Is DH ever kind of mild? In other words, yeah, it's pretty itchy, but I don't have oozing blisters like some people describe..

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks again everyone! Is DH ever kind of mild? In other words, yeah, it's pretty itchy, but I don't have oozing blisters like some people describe..

Yes, it can even vary in intensity for the same person over time. Mine was really bad and covered large areas as a child but in later years it was often much milder. Now when I get glutened I only get one or two little bumps.

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brett31em Rookie
brett31em
Posted
  • Author

Lately, I have been getting sick a lot too. What about candida?

ravenwoodglass Mentor
ravenwoodglass
Posted

Lately, I have been getting sick a lot too. What about candida?

You have only been on the diet a couple of weeks and it does take some time to heal. What are you eating? You should be eating a diet with as much unprocessed food as is possible and you need to make sure you have done things like getting a new toaster, replacing colanders, strainers and wooden utensils. You need your own dedicated condiments, nut butters etc. Give the gluten-free diet a bit more time before you start to worry about other issues.

  • 2 weeks later...
brett31em Rookie
brett31em
Posted
  • Author

Hey guys...so just a question...before being diagnosed, did you find that after you ate, say, a dish of pasta, it didn't satisfy you at all and you were starving 1.5 hours later?

ravenwoodglass Mentor
ravenwoodglass
Posted

Hey guys...so just a question...before being diagnosed, did you find that after you ate, say, a dish of pasta, it didn't satisfy you at all and you were starving 1.5 hours later?

Early on in the disease course yes. If your body is not absorbing nutrients it can try to counter that by signaling you that you want more food.

  • 5 weeks later...
brett31em Rookie
brett31em
Posted
  • Author

Early on in the disease course yes. If your body is not absorbing nutrients it can try to counter that by signaling you that you want more food.

So there is definitely digestive improvement, but there is something else going on with this water retention. I had an abdominal and pelvic sonogram and everything looks normal! Doctor doesn't think it's necessary to test vitamin levels/reproductive hormones...even though my last one said I was low in Vitamin D. I think this is absolute crazyness. What are some possible causes for severe water retention throughout (not just during period) the menstrual cycle?

kareng Grand Master
kareng
Posted

So there is definitely digestive improvement, but there is something else going on with this water retention. I had an abdominal and pelvic sonogram and everything looks normal! Doctor doesn't think it's necessary to test vitamin levels/reproductive hormones...even though my last one said I was low in Vitamin D. I think this is absolute crazyness. What are some possible causes for severe water retention throughout (not just during period) the menstrual cycle?

Which doc did you go to? Ob/ gyn or regular? Go to the other. Get tested for iron, b12 & d. Salt can cause water retention if that is what it really is. Diet & regular sodas and processed stuff have a lot of sodium.

Have you tried not eating dairy for a couple of days? If you have a hard time digesting, it can make you bloated.

ravenwoodglass Mentor
ravenwoodglass
Posted

So there is definitely digestive improvement, but there is something else going on with this water retention. I had an abdominal and pelvic sonogram and everything looks normal! Doctor doesn't think it's necessary to test vitamin levels/reproductive hormones...even though my last one said I was low in Vitamin D. I think this is absolute crazyness. What are some possible causes for severe water retention throughout (not just during period) the menstrual cycle?

I had pretty severe water retention and full body edema. In my case it was due to celiac impacting my kidney function. I instictively stayed away from salt, I had one package that I had for over 5 years that moved with me through 3 different states. LOL. So we know it wasn't due to that. Doctors couldn't really tell by looking at me because I am a very small person and it wasn't localized. It did resolve pretty quickly gluten free, I even lost a full shoe size, the only problem I have now is that when I get glutened my kidneys still bleed a bit leading to my having a bit of blood show up in my urine.

As to your doctor not testing for vitamin levels, you do have the option of consulting another doctor. My OB/GYN was much more helpful than my regular doctor but you might want to find another GP or Internist.

brett31em Rookie
brett31em
Posted
  • Author

My new OBGYN seems to think that my hormones have changed as a result of gaining ten pounds on the BCP, and that it is not related to the Celiac...sound plausible?

GFinDC Veteran
GFinDC
Posted

Hey guys...so just a question...before being diagnosed, did you find that after you ate, say, a dish of pasta, it didn't satisfy you at all and you were starving 1.5 hours later?

I can tell you that I ate a lot more food before going gluten-free, and didn't gain weight. Now I eat less and put on weight. Sort of like a normal person now.

You can get some liquid B-12 and try that, and some Vit D in gel capsules might help too. It's a good idea to get testing first so you can monitor your vitamin levels as you go.

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