I Think I'm One Of You

[Hydrokube]

A few days ago I got really fed up. I have and have had severe acne since I was 16, I've been chronically underweight at 125lbs at 5'11". I've tried everything, from intense workouts, to eating 4 sandwiches in a meal (every meal was that size for months). I convinced myself that I just had bad skin, a high metabolism, that I must be normal.

I went vegetarian 5 years ago and my acne cleared up slightly, but it was around the same time I went on Proactiv. My skin never completely cleared up, and I had frequent outbreaks. I've been endlessly frustrated by everything because I do yoga 5 days a week, I eat healthy, but my skin/weight never improve. The other day a thought popped into my head, maybe I have a problem with gluten. It was then that I found the Celiac information and things started clicking together.

I read about how Celiac can happen in anyone, and typically activates during a stressful period in life. When I was 14 my parents got divorced, and I think that's when it started. My wife and I started pouring through pictures together, and what looked like a completely healthy, although thin, 13 year old begins to transform into a pale, skinny, tired-looking 14-16 year old. To top this off, my hair began to recede at 16.

We charted out my symptoms as follows:

• Severe Acne
  
• Underweight
  
• Canker Sores
  
• Undigested Food in Stool
  
• Blurred Vision in left eye (progressively worse since I was 22 or so, I think it's the toxins from the gluten)
  
• Hair Loss
  
• Excessive Thirst
  
• Dark Circles Under Eyes
  
• Fatigue
  
• Dermatitis Hepaformis (winter rash all over my legs)
  

Piecing all of this together, I decided to try going gluten-free right away. My wife has already planned to make veggie chili that evening, so we had that and I had eggs with veggies and banana/juice for breakfast. I got ridiculously hungry! It was as if someone had opened the floodgates and my body said FEED ME. I also got a headache all night. Today it was just as bad, I woke up famished and had to eat right away, and I continued to eat all day. I'm just glad we're vegetarian and had quite a few items already gluten-free.

Around 1pm my wife went to the health food store and got some liquid vitamins (to help detox) and some extra gluten-free foods. Well, we were eating some crackers/humus and we paused to take some liquid vitamins. I sat down, continued about my business, then got up to get some water. I'm still feeling a bit off at this point. Then, a flash of energy, and my entire face starts tingling and burning! I looked in the mirror and my face was completely red. I then took a look at my hands and they were red, as well as my joints. My wife made me strip and every joint was red and tingling. It was as if the blood had rushed to my injured body and began to work immediately.

The redness faded after 10 minutes or so, but my joints continue to have a dull ache as if my body is actively working on them. Also, after a slight stomach ache, my hunger subsided completely! I ate dinner and got full much sooner than earlier. It was amazing! I feel like my body is in the healing stages now, but just knowing that this is almost definitely my problem is so fantastic. I only wish this illness could be more easily diagnosed, as it could have saved me 10 years of misery.

I used to have quite a bit of stomach and bowel issues (and still do occassionally, excessive gas, bloating, and stomach pain), but lots of those subsided when I became vegetarian. I tend to think that eating healthier (and coincidentally less gluten than ever before) may have helped me not feel so bad.

Also, my brother was diagnosed with IBS last year, and has frequent stomach problems. I know celiac and gluten allergies run in families, so he might also have it (it's frequently misdiagnosed as IBS). Also, my sister has Crohn's disease, and my other sister is rail-thin like me, which is a symptom of Celiac disease and gluten intolerance/allergies.

[1morething]

Have you been checked for Diabetes? Many of your symptoms are those of Diabetes, excessive thurst, weight loss, fatigue, hunger... I've been a diabetic for 27 years now and I've just been diagnosed with Celiac 5 mths ago. These auto-immune diseases are all related. My Gastroenterologiest told me, diabetes, Celiac and Thyroide diseases are like the 3 musketeers.... They go together.

Good luck and please see a doctor regarding the above possibilities.

Rachel

[Tallforagirl]

I only wish this illness could be more easily diagnosed, as it could have saved me 10 years of misery.

By deciding to go gluten-free without any testing you've made it more difficult for yourself.

There is a lack of awareness of celiac disease, but don't think it helps when people fly under the radar and change their diet without getting tested first.

If you are diagnosed they'll test you for vitamin deficiencies, other related autoimmune conditions and bone density as a matter of course.

You should probably visit your doctor now and ask about getting those tests done, whether or not you're going to do a gluten challenge and try for a proper diagnosis of celiac disease.

I'm glad you feel better anyway.

[Hydrokube]

Thank you for the advice. My wife is going to make a doctor appointment for me today, but we're not sure which type of doctor to see. We have a really great insurance plan that lets us see any type of doctor without needing a referral. Should I go directly to a gastroenterologist or something, or just see a regular general practitioner? I'd appreciate a recommendation asap as I'd like to make the appointment first thing this morning.

My wife is going to print a bunch of information including what tests we think I should have done. I'm going to continue going gluten free until the appointment so that I can tell the doc whether or not gluten free made my symptoms improve. I'm not sure yet if I'll do a gluten challenge but at least the doc can test me for vitamin deficiencies, hormonal problems etc.

I was tested last year for hyperthyroid and they said I don't have it. Thyroid problems are rampant in my mom's side of the family though, as are digestive disorders (my sister has Crohn's, my brother has IBS, my aunt has IBS, my uncle has colitis, and my cousin has a very rare digestive disorder). I can't think of anyone with Diabetes in my family though.

Also I read that long thick eyelashes can be a sign and I definitely have those, as does my 6 month old baby girl! People always comment on my eyelashes, and everyone loves my daughter's eyelashes!

[Hydrokube]

By the way, we researched achey joints and redness last night and it was most likely a reaction to the B12 in the vitamin I took (liqui-vite)! Does anyone else have that experience when taking B12?

[gfb1]

Thank you for the advice. My wife is going to make a doctor appointment for me today, but we're not sure which type of doctor to see. We have a really great insurance plan that lets us see any type of doctor without needing a referral. Should I go directly to a gastroenterologist or something, or just see a regular general practitioner? I'd appreciate a recommendation asap as I'd like to make the appointment first thing this morning.

depends on your insurance. also ASK if the doctor has prior experience with celiacs. this will save a world of hurt -- and they ARE out there these days.

My wife is going to print a bunch of information including what tests we think I should have done. I'm going to continue going gluten free until the appointment so that I can tell the doc whether or not gluten free made my symptoms improve. I'm not sure yet if I'll do a gluten challenge but at least the doc can test me for vitamin deficiencies, hormonal problems etc.

as someone else commented;

if you are gluten free -- you will subvert blood tests and, possibly, biopsy -- depending on the length of time you are gluten free.

I was tested last year for hyperthyroid and they said I don't have it. Thyroid problems are rampant in my mom's side of the family though, as are digestive disorders (my sister has Crohn's, my brother has IBS, my aunt has IBS, my uncle has colitis, and my cousin has a very rare digestive disorder). I can't think of anyone with Diabetes in my family though.

Also I read that long thick eyelashes can be a sign and I definitely have those, as does my 6 month old baby girl! People always comment on my eyelashes, and everyone loves my daughter's eyelashes!

sorry for all the family trouble. but, eyelashes have nothing to do with anything. neither does blood type, fingerprint, etc/etc/.

please stop paying attention to the nonsense. it will also save you trouble in the long run.

vitamins can't hurt (mostly), but are not necessary until you have a REASON (whether from blood test or symptomology). also, stop buying the expensive ones. these companies make way too much money off of sick people.

also. detox is nonsense. don't waste your time/$$$/hopes.

sorry in advance; obviously another cranky day for me.

[Hydrokube]

I have an appointment set with a Gastroenterologist in two weeks. I am going to continue a gluten-free diet, as I cannot justify further poisoning my body - if my symptoms improve that will be proof enough for me. I would like to get all of my vitamin and hormone levels checked though, and see what the doc says about testing for celiac.

I talked to my mom tonight and uncovered a significant family history of digestive problems. She is going to do more research on celiac disease, and then she wants to host a conference call with all of my family members to discuss our symptoms. We're convinced my family members may also have undiagnosed celiac disease, and that some of their disorders may even be misdiagnosed and are actually celiac. Here are some of their medical problems.

Great Grandmother: 100% Irish, complained constantly of stomach problems her entire life

Grandfather: distended belly, sever adult acne, iron deficiency anemia that requires regular iron injections, irritability

Uncle 1: diagnosed colitis, severe pain in abdomen, feels extremely sick after drinking beer

Uncle 2: obesity, thyroid problems (they keep adjusting his medication), chronic fatigue, sleep apnea

Aunt: thyroid problems (hypothyroid), diagnosed irritable bowel syndrome

Mother: unexplained fatigue (been to doctor several times for this), had anemia several time throughout life, currently experiencing an unknown allergic reaction on eyelids (eyes keep swelling and doc doesn't know why)

Cousin 1: severe stomach cramping and projectile vomiting (not sure what he was diagnosed with but he has to use a medicine sprayed up his nose)

Cousin 2: chronically underweight

Cousin 3: peanut allergy

Cousin 4: ADD

Sister 1: anxiety and panic attacks, chronically underweight, childhood rash tied to unknown allergy

Sister 2: crohn's disease that resulted in several surgeries, lower left quadrant abdominal pain that doctors found unusual for crohn's patients, recurring rash tied to unknown allergy, severe pain and digestive response to doctor's recommendation to consume grains and fiber in an effort to improve crohn's, now on a restricted fiber diet for crohn's

Brother: diagnosed irritable bowel syndrome, acne, childhood rash tied to unknown allergy, doctors tested him twice for celiac because they were sure he had it but the results were negative, hairline receding at age 16

Me: chronically underweight, acne, receding hairline, severe stomach pains as a child (my mom reminded me of this) that the docs attributed to growing pains, joint pain as a child (had to wrap my legs) attributed to growing pains, recurring rash on legs tied to unknown allergy, pigeon toe as a toddler, canker sores, fatigue, undigested food in stool

It's incredible how many problems my family members have! If they get tested and come up positive for celiac, then I'll be even more convinced that I have it. After I talk to the doctor my mom is going to see if that same doctor is in her insurance plan so she can bring my siblings to see him.

[mushroom]

That is an impressive family history. By the way, are you planning on asking the GI to do an endoscopy with biopsy, because your blood results will probably be negative or inconclusive by that time if you stay off gluten.

[Hydrokube]

By the way, are you planning on asking the GI to do an endoscopy with biopsy, because your blood results will probably be negative or inconclusive by that time if you stay off gluten.

I'm not sure yet, I want to see what the doctor says. I want to avoid the biopsy if I'm sure at that point that this is it (based on symptoms improving) or if the doc says it is.

My wife wants to get the blood test as she was diagnosed with IBS, just to make sure she doesn't have it too (her mom was also diagnosed with IBS). She is still eating gluten because she's trying to finish all the gluten crap in our house LOL, and there is a TON of it! She's really worried about our baby having digestive problems and wants to make sure she doesn't have it too.

[Hydrokube]

Update: My wife and I went on a date today to go bowling and I was feeling fantastic, really happy and enthusiastic, which is unusual for me. After two games, I kissed my wife, and noticed she had put on lip gloss. After about 5 minutes, I got stomach pains, which in the past I've always associated with being hungry. They are very intense and urgent, so I always felt like it was a "feed me" sign. I also got a bit irritable and very fatigued. We didn't think anything of it, and went and got me a gluten-free snack from the health-food store nearby. I was feeling a bit better and we were driving to her parents when my wife mentioned that maybe her lip gloss had gluten.

Well, thinking back, she had used it in the morning and I had kissed her at the bowling alley with no problems, but when she reapplied, almost immediately after I felt ill. I had mentioned to her that it was sticky and gross, and I had some on my lips as a result. When we got to her parents house I looked up the brand and it is notoriously glutened.

My gut tells me that I definitely have a strong reaction to gluten. Today is the fifth day since I've been gluten-free, does anyone think that I could have a reaction to gluten that quickly?

[Leper Messiah]

I think you should wait a few days then try the lip gloss kiss again then by isolating it you should be able to know. For my sensitivity it seems I have a delayed reaction which makes pinning the causes really difficult and can result in my giving blame to something innocuous and in all likelihood gluten free.

[Hydrokube]

Thanks, that's a great idea. It seemed that my flare up only happened for 2-3 hours with that minor amount, so I'm hoping that it's the extent of it once I'm all healed. Boy do I get cranky though, and a bad stomach ache! It must be rough dealing with a delayed reaction, especially when I keep reading about transfer of residues from handles, knobs, etc onto food that you eat with your hands.

My mom called me to tell me after our talk the other day she got really curious about her cosmetics/hygiene products (since her eyes swell up really bad and doctors can't figure it out). She found out that wheat was in her shampoo, and once she started thinking about it, it only tends to NOT happen on the weekends when she tries to use up old shampoos and such. I'm really curious to see if ditching the shampoo makes her odd eye reaction go away (but I bet it will). She's also on board and ready to start a gluten-free diet for the whole family, since my sister is Crohn's and she read that most recommendations are to start gluten-free since 85% of Crohns have Celiacs!

[Remenyke]

Did you ever think that maybe it's there because you're looking for it?

[Hydrokube]

Sure, I've considered that, but I didn't consider it at the time. I didn't even think about gluten until my wife brought it up jokingly.