I'm New, And It Seems Like Everyone Thinks I Am Crazy :(

[JackieG2903]

Hello! I'm very glad I found this place. I suspect that I either have gluten sensitivity or celiac disease, and have reached out to people on Facebook because I knew a few of my friends are also dealing with this. But several people are treating me like I'm a total hypochondriac It's probably because I am just not a complainer, so I haven't been talking about these health issues I've been having for quite some time.

 

I do not have health insurance, and am already paying off a big bill, so I can't afford testing. I called my doctor with my concerns, and because of my insurance status, the nurse advised me to research a gluten-free diet. She said I would definitely know if it was gluten that is bothering me, because I would feel better in a few months.

 

Here are my symptoms:

 

I was diagnosed with GERD when I was 13, after a barium milkshake/scan.

 

I discovered a love of baking and cooking about 2 years ago... that is when my chronic headaches and stomach issues began. I get a pretty bad headache almost every night, and sometimes I go days with a persistent, aching headache. Sometimes these morph into migraines.

 

I have a constant bloated/full feeling. I have had to size up my clothing even though I haven't gained a ton of weight.

 

In the last month, I have been feeling worse. I have an almost constant stomach ache, which is worse after I eat. My stomach spasms and its quite painful. I'm up all night because of these stomach aches, and the gassy/bloated feeling. I haven't had a good night's sleep in quite a while.

 

I have been dealing with a persistent rash/excema for several years. I get it on my scalp, my fingers/hands, and my toes/feet. Little fluid-filled blisters that don't hurt until they are popped, then they sting a little. 

 

I have had an increase in diarrhea in the last month. Before, I dealt with constipation issues off and on.

 

I have literally lost 9lbs in the last 7 days. I attribute that to the fact that I feel so nauseous all the time, that I rarely have an appetite. I'm slightly overweight so weight loss isn't a concern right now.

 

I feel tired ALL THE TIME. I constantly feel like I am "coming down with something". I am just worn out... I attributed it to chasing 3 kids all day, but this goes deeper than that. I just have NO energy!

 

I have constant aches in my hips and knees... I just attriubuted that to that fact that I am slightly overweight, but it seems to be getting worse.

 

I pretty much feel sick all the time. I'm so uncomfortable in my own skin and I'm tired of it I've had a myriad of stomach issues - ulcer, gallbladder spasms etc... this feels different and its chronic, and never-ending.

 

I've been suspecting Gluten for a few months now, but kept telling myself it wasn't that, mostly because the life change intimidated me.  I had a total meltdown the other night because I felt so awful, and decided that it is time to try gluten-free to see if it helps me.

 

This is my second day eating gluten-free, so obviously I don't feel any different yet and I don't expect to for several weeks. It just drives me crazy how people (specifically my mother and mother-in-law) are treating me like I am crazy. They think I'm going to starve myself or be malnourished by cutting gluten from my diet... and all because I don't have a paper diagnosis from a doctor. I've tried to explain that lots of people cut gluten by choice, but they keep harassing me about it. Ugh!

 

Whew, that was a novel. Thanks for letting me vent! I hope changing my diet helps me.

 

 

[GlutenFree2013]

Hello Jackie,

 

I too has having many of the similar symptoms as you, such as, upset stomach, bloating, gas, constipation and diahrea, etc. I actually had these pimple like bumbs on my scalp for about 4 years now. I've been gluten and dairly free for about 2 months now and I've noticed all of these symptoms virtually disapear. How does your body react to dairy? I recommend cutting that out too. Also, stick to natural foods. DO NOT EAT PROCESSED FOODS, I cannot stress that enough. No fast food, no fried food, no junk foods. cut back on sugar, do not drink soda. Also cutting back on red meat might help you, eat fish and chicken instead. Make sure you're getting enough magnesium and vitamin D in your diet, many people are deficent on those.

 

It seem overwelming at first, but it will pay off when you're mind and body are in balance. I was having very bad anxiety problems, which I attribute to my stressful job, but when I changed my diet it, certainly helped. It's all about making little changes, like have water instead of a soda if you eat out. Or choose a salad instead of the pizza.

 

In about 1 month it will become a habit and eating gluten & dairy food will be no problem. You'll never be the same, you'll look at all the food you used to at as poisen, literally! If you follow this then i'm more than sure all the problems you've meantioned will disappear, you'll have less stress and have more energy too.

 

Hope this helps.

[JackieG2903]

Hello Jackie,

 

I too has having many of the similar symptoms as you, such as, upset stomach, bloating, gas, constipation and diahrea, etc. I actually had these pimple like bumbs on my scalp for about 4 years now. I've been gluten and dairly free for about 2 months now and I've noticed all of these symptoms virtually disapear. How does your body react to dairy? I recommend cutting that out too. Also, stick to natural foods. DO NOT EAT PROCESSED FOODS, I cannot stress that enough. No fast food, no fried food, no junk foods. cut back on sugar, do not drink soda. Also cutting back on red meat might help you, eat fish and chicken instead. Make sure you're getting enough magnesium and vitamin D in your diet, many people are deficent on those.

 

It seem overwelming at first, but it will pay off when you're mind and body are in balance. I was having very bad anxiety problems, which I attribute to my stressful job, but when I changed my diet it, certainly helped. It's all about making little changes, like have water instead of a soda if you eat out. Or choose a salad instead of the pizza.

 

In about 1 month it will become a habit and eating gluten & dairy food will be no problem. You'll never be the same, you'll look at all the food you used to at as poisen, literally! If you follow this then i'm more than sure all the problems you've meantioned will disappear, you'll have less stress and have more energy too.

 

Hope this helps.

 

Yes! I get the "pimples" on my scalp and they drain and drain and drain some more, then they scab and dry out and hurt. They drive me nuts!!

 

I forgot to add, I'm lactose intolerant, haha! I was tested a few years ago, so I avoid dairy. We already don't eat processed stuff, I make literally everything from scratch. I think that is what is so hard about this, I have to completely re-vamp how I cook for myself. My husband has NO interest in going gluten-free and my kids are picky enough as it is, so I'm going to end up making a separate meal for myself. It just seems easier that way! Just the idea of shopping and cooking and eating seems terrifying right now. 

 

I tend to crave red meat, but that is because I've been struggling with anemia for a few years now. I've tried iron supplements but they make me feel sick so I try to get it from natural sources - spinach from my garden, etc.

 

I just can't get past people being ridiculous just because I don't have a $500 piece of paper. It both hurts and annoys me!

[GlutenFree2013]

Yes! I get the "pimples" on my scalp and they drain and drain and drain some more, then they scab and dry out and hurt. They drive me nuts!!

 

I forgot to add, I'm lactose intolerant, haha! I was tested a few years ago, so I avoid dairy. We already don't eat processed stuff, I make literally everything from scratch. I think that is what is so hard about this, I have to completely re-vamp how I cook for myself. My husband has NO interest in going gluten-free and my kids are picky enough as it is, so I'm going to end up making a separate meal for myself. It just seems easier that way! Just the idea of shopping and cooking and eating seems terrifying right now. 

 

I tend to crave red meat, but that is because I've been struggling with anemia for a few years now. I've tried iron supplements but they make me feel sick so I try to get it from natural sources - spinach from my garden, etc.

 

I just can't get past people being ridiculous just because I don't have a $500 piece of paper. It both hurts and annoys me!

 

Don't worry about what other's think, it's irrelavent and at the end of the day, their opinions don't matter. Doctors can be over rated. I went to the doctor and they wanted to prescribe me anti depressants, it was a joke. They didn't even mention the word gluten, it would have saved me a lot of time and struggle.

 

Forget what I said about the red meat, it actually has nothing to do with your symptoms, it's just heart healthy to cut back on it.

 

The pimples on my scalp don't scab and dry out. Google "psoriasis". Does it look like this?

 

In most grocery stores have a natural foods section where you can find many gluten free products such as gluten free pasta.

 

I also forgot to mention to try to eliminate the simple carbs, aim for complex carbs! What people say about gluten free being malnutrious is complete nonsense. I believe that you will live a longer and healthier life on a gluten-free diet.

[JackieG2903]

Don't worry about what other's think, it's irrelavent and at the end of the day, their opinions don't matter. Doctors can be over rated. I went to the doctor and they wanted to prescribe me anti depressants, it was a joke. They didn't even mention the word gluten, it would have saved me a lot of time and struggle.

 

Forget what I said about the red meat, it actually has nothing to do with your symptoms, it's just heart healthy to cut back on it.

 

The pimples on my scalp don't scab and dry out. Google "psoriasis". Does it look like this?

 

In most grocery stores have a natural foods section where you can find many gluten free products such as gluten free pasta.

 

I also forgot to mention to try to eliminate the simple carbs, aim for complex carbs! What people say about gluten free being malnutrious is complete nonsense. I believe that you will live a longer and healthier life on a gluten-free diet.

Nope, it doesn't look like psoriasis. They eventually go down and the oozing stops, but they stay red, are flat, and scab over. 

 

We are driving 90 minutes one way to a few gluten-free stores, on Friday. I live in a REALLY small, rural town, so we have to go pretty far to get gluten-free products. Well worth the drive though, and I will be stocking up. It's just hard right now because I don't have much to choose from in my house. I've been eating fruits that I have canned, a lot sooner than I hoped! LOL

[melreis]

I''m 28 and I feel like I'm crazy!  My blood work came back negative, (but I'm anemic now) and  my Doc recommended I do an upper G/I endoscopy.  So. that's scheduled for the 15th.  I have D everyday several times a day, it's not always urgent but it's never normal and lately always undigested! ( i know, sorry) but  WTH is that?  I was diagnosed with IBS 2 years ago.   I have been feeling worse since January.  Slowly but steadily worse and worse.  Depression, no period since aug. 2010 when i got pregnant, low testosterone low progesterone, night sweats so bad im soaking through the sheets,  tingling arms, hands and feet,  to the point it's waking me up cause it hurts so bad, weight gain, headaches,  joint pain in hips and knees, mouth ulcers, blister rash on my stomach, severe itchiness, mood swings,severly bloated to the point of looking 4 months pregnant, no stomach feeling(never hungry/never full) and im so tired.  lately after i eat gluten it feels like I've been drugged, that''s how tired I am. Like I have to take a 3 hour nap right now and then still sleep 8 hours that night.  I was currently diagnosed with c. diff (first time) and have 3 more days of metro.  What a horrible antibiotic!!!  Makes me so sick!  So now I , cry everyday and I'm excitedly counting down the days till my endoscopy/ last day of gluten. 

[ToriForte]

Hi Jackie!

 

I totally get what you're going through, I'm dealing with this exact thing right now. The amount of energy I have when I don't eat gluten is AMAZING. I've gone my whole life thinking I was lazy but it turns out I was just poisoning myself every day.

 

I went on an elimination diet for a couple of months and then have since tested gluten. It is 100% the cause of so many problems for me including bloating, skin rash (that I've had since I was a kid), numbness in some of my fingers, increase in anciety and depression symptoms, digestion problems (feels like I am digesting big shards of glass), brain fog, etc etc etc. I am still struggling to comprehend how something I've eaten basically every day of my life can affect me in so many different ways. I am afraid to have official testing done because I've heard you have to eat gluten for 3-5 weeks or it won't show up on the test. I will have to talk to my doctor when I have my appointment next month and see what she says. I am pretty positive that I have celiacs though, and I don't care if people think I'm a hypo (definitely not) or just following a "fad diet" (so stupid). I have never felt better in my life. I am concerned that people will not take it seriously enough because so many people are just cutting out gluten because it seems like the thing to do. I am being very cautious about where I go out to eat and mostly am cooking my own food.

 

One tip I will give for general health - there's nothing wrong with indulging in gluten free products that are intended to mimic/replicate some of your favorite gluten-y foods. But the easiest and simplest way I've found is just to eat mostly protein, veg, and fruit. I try to eat locally grown/organic wherever possible but it is actually pretty easy to eat gluten free without having to buy special products. I am an adventurous cook and eater so I definitely work things into my calorie budget but 80% of the time my diet is very simple. I've noticed food tastes better these days too, pretty cool!

 

Anyway, good luck to you! I am still learning what I can and can't do. It's not always easy but it's better than the alternative!

[nvsmom]

Welcome to the forum 

 

I would consider double checking what insurance will cover before going gluten-free. If you decide at a later date to be tested for celiac disease, it can be extremely hard for some, based on their symptoms, to go back to eating gluten for two months in order to get accurate tests. It can be usually be done, but it's not fun.

 

If you do look into testing, the tests are:

• tTG IgA and tTG IgG
• DGP IgA and IgG
• EMA IgA
• total serum IgA (control test for all IgA based tests)
• AGA IgA and IgG (older test for gliadin intolerance)

I am glad you are feeling better eating gluten-free though, you must be on the right track! If you start to feel worse in a few days, don't discount the diet - you might hit withdrawal (1/3 of celiacs do) but it only lasts a week or so.

 

You might want to see if the doctor will do some nutrient testing too. Many celiacs are low in the B's (like B12), D, folate, iron, ferritin, potassium, calcium and zinc. Thyroid issues are fairly common too so if you suspect hypothyroidism request a TSH (should be near a 1 in spite of what the doctors say), free T4 and free T3 (should be in the upper 50-75% range of your lab's normal reference range), and TPO Ab.

 

I agree with the others that eating a whole foods diet is often the most helpful to recovery. I do disagree that avoiding meat is heart healthy - that theory has been debunked, it is actually too many carbs that does it. Open Original Shared Link Gluten free substitute foods aren't bad but they are less healthy than their "glutenous" counter parts because they haven't been fortified with vitamins (like wheat flour is) and they tend to contain more sugar to make it more palatable. I do LOVE an occassional gluten-free brownie though. 

 

Oh, and I think hypochondriac is just another word for chronic illness!  I used to joke with my husband that i was "going hypochondriac" when I would get that feeling like I was coming down with a flu yet never get the flu. I felt semi-sick a good week out of every month, but others can't see anything, unless it's a bit less twinkle in the eye. Celiac is a systemic disease that can affect every part of you. Make sure you give the healing lots of time, symptoms like joint  pain can take many months to resolve. Hopefully that is not the case for you.

 

Best wishes.

[howlnmad]

Read some more on here, you'll find out that most are a bit touched in some sort.

[1desperateladysaved]

Greetings Jackie,

I choose to believe you have a gluten problem, or real symptoms.  They don't sound fun.  I remember the extreme fatigue that didn't go away after rest or anything else.  I imagine the doctors thought, "Five children, a little tired??? But of coarse."  I wasn't taken seriously.  I know that hurts.  My mother use to tell me that she couldn't feel my pain, and I guess nobody ever can.

 

I am so glad you cook.  Red meat is one of my best tolerated foods, so there is some difference of opinions here.  What you cook, you know what is in there.  That will help you as you move on.  Meat and vegetables are gluten free. 

 

My Functional Medicine Nurse told me that anemia is often the earliest sign of celiac disease.  That doesn't mean everyone with anemia has celiac, only that it may be the first symptom.  Anemia does make you feel fatigued.  Have you tried some natural iron supplements?  I agree to have your nutrient levels tested as soon as you can, or trial some common deficiency ones one at a time to see if they help.  This would include magnesium, B12, Folatin, iron, Vitamin D, *digestive enzymes, Vitamin B complex.

 

I went 30+ years undiagnosed.  I have been gluten free for about 18 months and I am feeling better.  Learn all you can about the diet as you begin.  I am hoping you will be feeling better soon.

 

Here are some flowers  ***

 

D