I think I'm one of you

[Veggie]

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.

[lisac957]

Interesting...
Usually the most common symptoms of Celiac are digestive issues. I only saw one in your list... if you read the "Compare Gluten Reactions" thread that might give you an idea of what the most common symptoms are.

Have you seen a doctor to help with your issues? I'm not sure they are all related to Celiac, but it sounds like something that needs medical attention either way.

Good luck!

[Veggie]

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.

I think I'm going to stick with the diet for a while and see the results before I get checked out. I tend to distrust what doctors will say after reading stats about how 11 years is the average time to diagnose.

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.

[Rosie]

Hi Veggie,
I have some of the derm symptoms you mentioned also- canker sores and acne that appear/worsen with gluten consumption. From my perspective skin correlates largely with gluten......I would keep at the elimination diet for a while and see what clears up!

[Veggie]

Will do, it's now day 5 and I have had a persistent pain/discomfort/burning in my lower left abdomen. I feel like I might be healing, since I've never really felt that way before. I'm also seeing marked improvement in my acne, but we'll see if it continues to improve over the next week or so.

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.

[Veggie]

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?

[Valerie]

You could definitely have a reaction to gluten that quickly, especially because it sounds like you have a pretty advanced case.

You can tell your mom that I had the swollen eyelid thing as a child. Plus with eczema on my eyelids. Plus a bunch of other symptoms that I now know point toward celiac and in 2 complete GI workups a doctor never once thought of celiac.

[jennyg]

One thing you might want to think about - to be diagnosed with celiac disease, they usually do blood tests and a biopsy of your small intestine. However, if you are not currently eating gluten, your blood tests could be negative. I'm not sure how long it takes before a biopsy would be negative (or a blood test for that matter). So if you want a conclusive diagnosis, you should probably get tested before you're on a gluten-free diet too long, or your doctor might put you back on a gluten diet in order to properly test your antibodies. But I guess even if you don't have celiac, it sounds like you're doing great on a gluten-free diet! Doesn't it feel good to finally find an answer to so many problems after so long?? I'm happy for you!

[Veggie]

I think at this point I'm more concerned with feeling great than any diagnosis. I'm at exactly a week today, and I woke up feeling great for the first time in I don't know how long. The feeling didn't last all day, but it was enough to make me feel that I'm on the right track. Last night I did an hour of yoga to help bring out the toxins from my intestine and half-way through it I got a severe headache. I finished up the yoga but have had a headache ever since.

My wife thinks she might also have it, as she was diagnosed with IBS 10 years ago, but in reading the classic IBS symptoms, it just doesn't fit. The more she reads, the more she thinks her symptoms more closely match Celiac. She, however, is going to keep on gluten until the doctor to get tested. I told her she's crazy because she is ingesting 2x the gluten trying to eat it up while I'm gluten-free, and she feels horrible and tired all the time! We also are going to ask the doctor about our little 6 month baby Emma, who we're concerned about too. She just started solids but so far just avocado, sweet potato, and rich cereal.

Aww, I tried to post a pic of Emma but I need 15 posts, maybe next time.

It does feel fantastic to think that I may have finally found the culprit after years of suffering!

@Valerie: I told my mom about your eyes too, she was definitely curious. My mom is going to a naturopath MD to discuss Celiac and try to get a diagnosis and then going gluten-free regardless to support my sister who has Crohns (my sister is so excited to maybe be able to eat relatively normal compared to her current diet).

Thanks for all the input and advice everyone!

[simcap]

Try reading "Food Allergy Relief" by James Braly and "Sugar Blues." My family is Irish and Sicilian and we have some of the same family history of digestive illnesses that you do. One in 122 Irish have celiac. I was recently tested for food allergies - both types - immediate-onset IgE and delayed-onset IgG. The results were surprising. I was allergic to cow's dairy, beef, almonds and several other odd things. I also got a stool test for Entero labs that confimed a gluten sensitivity. I would highly getting your wife and daughter tested as well as reading those books. I dropped sugar from my diet as well - all forms including honey and agave nectar and whenevner I test them back in, I get tired immediately. That might be the case with your wife, maybe Candida albicans? When you have food allergies - to gluten or anything else - your body can malapsorb foods and you become deficient in certain vitamins and minerals that lead to diseases. One last thing to consider is that once you eliminate an allergen from your diet - your body goes through a withdrawl period where you liver and kidneys ache - because they are so busy getting rid of years of toxins. Best wishes and speedy healing. Be aware that healing could take years!