Please Help! Self Diagnosed Myself With Celiac Disease

[MomOf2PrettyGirls]

Hello there. This is my first time posting to this site. I've read quite a bit over the passed couple of weeks, but never posted. I decided to share my story and see if I could get some help.

I'm 22 years old. Mom of two little girls. 3 year old and 7 month old. My pregnancy with my second daughter was amazing. I felt healthy and wonderufl(other than acid indigestion, which is to be expected during pregnancy) However, after she was born, I went through a great deal of stress. I was hospitalized for Mastitis when she was a week old.

Then about three weeks after that I started experiencing awful upper stomach pains. They felt like a dull, gnawing ache. I felt like I needed to eat to resolve the pain, but then again it hurt after I ate too. Then a different pain in my upper right quadrant, that was like a stabbing. I have been in the ER about 6 times since she was born and to my General Practicioner about 8 times. The ER doctors kept saying it was anxiety and nothing was wrong with me. My GP thought it was GallBladder related, I had an ultrsound and revealed "gallbladder sludge" so they removed it.

About a month after it was removed, I had the upper middle stomach pain again. Along with acid reflux, heartburn, chest burning sensation. (I was on Omeprazole during all of this too) So, I went back to my GP and he still thought it was an Ulcer. I, however, started researching Celiac Disease and a Gluten Free Diet, but didn't start it just then.

A month ago I was eating some Wheat Thins(my favorite snack that I hadn't had since before the baby was born) Immediately afterward I had to run to the bathroom with awful cramps and diarhhea. Then, 3 weeks ago, I was at my grandma's house and ate some Pasta Salad. About 15 minutes after I ate it, I had the worst acid reflux and heartburn I had ever had! It physically hurt to breathe. My throat and chest felt on fire! That's when I figured it had to do with the starch in the pasta. I started gluten-free diet the next day.

Here's the tricky part. I went back to GP, told him I was having more stomach issues. He put me on Ranitidine(twice at bedtime) This was the same day as I started gluten-free Diet.

I have felt WONDERFUL since that day!! I don't know if it is the meds or the gluten-free Diet. Can anyone add any insight? I haven't felt this good without bloating, stomach pains, heartburn, acid reflux since before I was pregnant, a year ago!!

Thanks in advance. Sorry so long!

[lonewolf]

Welcome!

It could be one or the other, or both! A simple test would be to continue to take your medication and eat some wheat thins, bread, pasta or something gluten filled. Or you could stop your medication and continue to eat gluten-free and see what happens. Maybe you could try it both ways and see which works best.

Did you ask your doctor to test you for Celiac Disease? You need to be eating gluten for the tests to be accurate.

[MomOf2PrettyGirls]

Thanks for the reply Liz.

Yes I told my doctor that I had started the Gluten Free diet and he said "Good, that sounds like it could be the issue, though you will be the first patient in 20 years that i've seen with it." He also told me there are no tests to determine if I have it, so obviously I can't believe everything he says.

I'm so scared to add Gluten back because of the pain i was in, but I know that's what I need to do in order to know which is helping me.

Thanks again!

[lizard00]

Hello and welcome to our forum!

PLEASE get another opinion if possible. There are tests that are pretty specific to celiac disease; I'm totally shocked that he would tell you something like that.

You've gotten great advice. You need to experiment with eating gluten w/ and w/out the medication to get a better idea what's going on. And yes, if you decide to be tested, gotta fill up on that gluten!

[FMcGee]

I'd get tested, honestly. It's good to know this kind of thing. You'd have to eat gluten, but it might be worth it. It's probably at least worth talking to a doctor about.

[MissyMayhem]

I know what you mean. It's kind of a daunting prospect, going on gluten again. I am currently faced with it myself, as without a "firm diagnosis" I am unable to get any finacial support, any help with the pain or testing for osteoperosis which I'm showing signs of.

The thought of having to go back to where I was (stomach issues and chronic pain) just to get a diagnosis makes me feel very frustrated. I can only take comfort in the fact that this time I have knowledge behind me (a lot of which I gained through this site) and lots of support from other people who have faced a similar struggle trying to deal with health issues. thx all

I don't want to settle for being fobbed off by doctors (although I'm yet to find a doctor that will treat me seriously). I want a solution, otherwise I will keep loosing functionality (and teeth) and will have no quality of life:/ I can only hope they will do there job well enough to do a proper biopsy (preferably without damaging my throat this time with the endoscope). Sigh..

On the bright side, I take great joy from the fact that, at times. when I do everything I can (exercise, eat right, sleep 9hours) the pain and stomach issues become managable. Good luck:)

[happygirl]

Yes I told my doctor that I had started the Gluten Free diet and he said "Good, that sounds like it could be the issue, though you will be the first patient in 20 years that i've seen with it."

If this is your doctor's response, then he has missed many, many cases of Celiac, just by sheer numbers/statistics, and the reason why it takes so many people so long to be correctly diagnosed.

I hope you continue to do well on your diet!

[Liveenjoylife]

I have read pregnancy can trigger celiac disease, so it sounds like in your case that is what has happened. Glad you feel better now.

[MomOf2PrettyGirls]

Thank you all so much.

I think from your responses that I need a second opinion. Hopefully someone around here will take me seriously. Everyone (including my family) was begining to think I was a hypochondriac. I even started to myself until I started this diet. Myabe I need the diet and the meds, but i'm going to experiment and see if I can rule out one or the other.

and yes, my doctor is very old fashioned. He called it "Sprue" rather than Celiac Disease, which i've never heard, but later did see it on some of my internet searches.

[lizard00]

and yes, my doctor is very old fashioned. He called it "Sprue" rather than Celiac Disease, which i've never heard, but later did see it on some of my internet searches.

That's the 'old school' name. It's pretty much the same thing.

[MomOf2PrettyGirls]

So I must be crazy! I went back on gluten for the day to see if it was the diet or the meds helping me.

I ate a PopTart for breakfast (it has wheat flour among other things)

Tiny slice of frozen pizza for lunch

Cheetos as a snack (apparentley all Frito Lay products are Gluten Free, but I beg to differ)

The way I felt after eating those foods today was intollerable! I had acid reflux, heartburn, extreme stomach discomfort and cramps. Is it possible for Gluten to affect you that quickly??? Or was it just that I ate almost all junk all day? LOL! I will not be eating Gluten again, testing or no testing! Ugh! I feel awful!

[curiousgeorge]

So I must be crazy! I went back on gluten for the day to see if it was the diet or the meds helping me.

I ate a PopTart for breakfast (it has wheat flour among other things)

Tiny slice of frozen pizza for lunch

Cheetos as a snack (apparentley all Frito Lay products are Gluten Free, but I beg to differ)

The way I felt after eating those foods today was intollerable! I had acid reflux, heartburn, extreme stomach discomfort and cramps. Is it possible for Gluten to affect you that quickly??? Or was it just that I ate almost all junk all day? LOL! I will not be eating Gluten again, testing or no testing! Ugh! I feel awful!

\

Some flavors of doritos have wheat on the label so no, NOT all frito lay products are gluten-free.

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[MissyMayhem]

Sry for the long post..

I think your symptoms sound very much like what someone with active celiac would experience. If you get tested now before you start a gluten free diet they will be able to see the damage in your stomach, then you can get support and information provided on how to get your diet right (they wont give you this till you've had a proper dianosis). They can check properly for other conditions as well, which might look similar.

My doctor is old fashioned as well, I simply asked her to refer me to a gastroenterologist, he was very interested in what I had to say and knows all about celiac disease. They have learnt so much new stuff about celiac in the last few years most doctors have no clue about, if your doctors calling it sprue his knowledge is a decade out of date. I called and spoke to the celiac contact center they were so supportive and knowledgable, the gastroenterologiest was their suggestion.

If your stomach is bad you may get other allergies like dairy, corn, etc and a low tollerence to processed food in general because of additives and starches (my nutritionalist told me that), these will go away after a while on a gluten free diet (took 2 years for most of mine to go). Now I have to break my gluten-free diet for testing and all the allergies may come back and I will have to start from scratch:( I'm told there are injections you can get to help but they only work on some people, my friends baby is getting this treatment at the moment as a result of celiac disease he was unable to feed. He's finally puting on weight:)

[MomOf2PrettyGirls]

Hey Becky,

Thank you! I completely agree with you. He is far out of date. I will ask to see a GI doctor. Hopefully i'll get one who knows about Celiac Disease, as i'm fairly certain that's the reason for all of my pain recently.

I think I do have intolerance to dairy (for sure!), possibly corn, and maybe even pineapple, watermelon and orange. Is that possible? Any time I eat it, I have awful stomach cramps.

I'm still in pain from yesterdays bout of junk food and gluten consumption. I'm actually a little better than yesterday, but not as good as I have been the passed week. How long does it take to recover? Hopefully a couple of days and i'll be doing better.

[Zeddess]

Hiya, I've self-diagnosed myself with a gluten intolerance too, your stomach pains sound just like the ones I've had for the last 5 or so years. They're horrible! Since being off gluten for about a week, it's really noticeable when I get glutened because the stomach pains come back ten times as worse! I'm considering going back on the gluten and getting a celiac blood test done, because at times I definitely feel like a bit of a hypochondriac too and think it might help to get an official diagnosis, even though I know that's what it is. Pretty sure your pains from being glutened will pass in about a day and you feel a lot better =)

[SLB5757]

Sounds like you are telling my story to a "T". I also started having issues after my son was born. He is 4 now - but I started having issues with the gastro symptoms right after he was born. It started slowly like every few days and quickly progressed to daily and every time I ate (or so it seemed - I was eating wheat/gluten at every meal basically). I was diagnosed by doc with acid reflux/GERD and given Nexium. Nexium helped with sharp pains - but it never took away the bloating/gas/distention in my stomach. It also never took care of the mental fogginess and feeling of lethargy or extreme tiredness.

I have been gluten free since about 5/18 and I have never felt better. I am not 100% - but I will most likely not go back to gluten containing foods. I still take the Nexium but hopefully once my system has time to heal I won't need to do that any longer.

I have noticed that I get gassy or what have you when I have lactose. If you still have any issues after going gluten free - I would suggest keeping a food journal so you can kind of hone in on what is really causing your problem. I have been allergy tested and while I came back sensitive to about every food imaginable - I still eat them. Since eliminating the gluten it is very easy for me to tell when a food disagrees with me now. before it seemed liek everything caused it (because gluten was in about everything I made).

Good luck to you!!

[MomOf2PrettyGirls]

Kami(that's my daughter's name too, but with a "C") Thank you for your input. My pains are completely gone today! It's so crazy. Like you, my pains came back 10x worse than they were before I went Gluten Free.

SLB5757-Wow our stories do sound quite similar. My dr put me on Nexium as well, but my ins wouldn't cover it so he changed it to Ranitidine. I'm still on it as well because he still thinks I have an Ulcer. I was on Omeprazole and RAnitidine and the pain was still there, but now that i'm Gluten Free, i've stopped the Omeprazole and feel so much better! I do'nt think I ever needed that medicine to begin with.

I also had mental fogginess, dizziness, headaches, lethargy, (the heart doctor siad I had Orthostatic Hypotension because I kept getting out of breath walking up our stairs) that is ALL gone now from just 2.5weeks on Gluten Free diet. I refuse to believe that was all in my head! I don't think i'll go back to Gluten for a Celiac diagnosis because the pains are just to bad! If there was one they could do without me being on Gluten i'd be all for it! lol! I thought about doing the Enterolab or another home lab test kit I found on celiacdisease.net Not sure yet though?

[OptimisticMom42]

Is it possible for Gluten to affect you that quickly???

I was sick about 20 minutes after a cup of "I swear, my elderly aunt made it from scratch, just coffee grounds, sugar and cinnimon" flavored coffee. So yep it can happen that fast. Took me about a week to be able to sh** again. Oh, and as an extra treat I overheard the co-worker with the elderly aunt, telling my boss that she thinks I'm a hypocondriac. My boss said, "I think so too. But I would never say it to her."

Since then the co-worker has been caught in many a lie and the boss has started helping me read labels!

[MissyMayhem]

Celiac causes your immune system to react to gluten. This is different from allergies (ie. wheat, dairy or corn allergy), you get these when your stomach becomes comprimised because of the gluten consumption (people refer to this condition as Leaky bowel syndrome) you can also get it from medication and viruses. You must be careful not to eat food you are allergic to, I find I mostly get cramps, acid and my heart pounds when I do, once I went into anaphaxic shock over some chocolate, seriously not good idea.

The good news is that after a couple years on a gluten free diet (also not eating anything I was allegic too), I was able to very slowly reintroduce these foods to my diet including my beloved chocolate. You can get a series of injections that do the same thing. they are expensive though and only work on some on people.

If my stomach is not working well (having a down), I stop eating highly allergenic foods like chocolate, citris fruits, corn, potatoes (sweet potatoes ok), dairy, processed food containing starches and anything from the nightshade family. I eat mostly brocolli, sweet potato, pumkin, spinach, carrots, bananas sprouted chickpeas, lentils, quinoa, beans, meat (not processed) and rice till my stomach is better again. To find out what I was allergic to I did an elimintion diet, a dietian helped me with it.

My dog had to do the same thing through the university because she ate a bait and got leaky gut, the allergies gave her horrid skin rashes and infected ears. She became allegic to what she was eating at the time (beef, rice, corn and chicken), so we gave her only sweet potato and turkey for 3 months so her immune system could recover. She can now eat high quality dog food (Eukanuba Sensitive skin) but if we put her on the cheap stuff the problems start again. We are told this is likely because of the high levels of flour and additives in cheap brands (particular starches) they are just too much for her stomach now.

An interesting thing I was told by the vet was 1 in 4 dogs develop a gluten intorerance, then allergies if they are on low quality food (supermarket brands). Wheat and oats are also know to cause problems in horses, the new horse diets they have come up with are all gluten free. There is much research saying wheat has some nasty tricks up it's sleave and shouldn't be a staple part of our diet even if we don't have active celiac disease.