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New -- Have Symptoms Of Gluten Intolerance
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I've noticed, for a long while now (about 2 years), that whenever I eat things with any real amount of gluten, I feel terrible not long after.

My symptoms include:

- Headache

- Fatigue

- Stomachache/nausea

- Bloating

- Gas/burping

- Vit D deficiency (found out from a blood test)

I know that these are typical symptoms of gluten intolerance/celiac, so my question is: Should I go to the doctor, or should I jut try to cut gluten out and see what happens?

A few years ago, I did talk to a doctor about it, and was told to try going gluten-free for a week or two to see if it helped. I only lasted a few days though since I was living at home, and my parents pretty much refused to buy/cook me gluten-free food. Now however, most of the year, I live at school, in an apartment, and I buy and cook my own food, so going gluten-free is a much more viable option.

Edited by keeponsingin
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Hi keeponsingin and welcome to the board.

You say you have symptoms of gluten intolerance now. I guess your trial at gluten free wasn't very edifying for you without the cooperation of your family. You have to think about how you would feel later on if your symptoms improved some, but didn't improve all the way, and you didn't have a diagnosis. Would you still feel that you should eat gluten free? Or would you be tempted to say, well this isn't really working all the way so it probably isn't really gluten and OMG, that pizza looks and smells so good!!!

You see, that's the problem without a diagnosis for some people. Do you still have insurance under your parents' policy to get the full celiac blood panel run? That consists of:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

If you get the blood test done you can know for sure (well, almost) whether or not it is celiac. If it isn't celiac it could still be gluten intolerance, but if you test positive on the blood work they will probably want to do an endo with biopsy to confirm the diagnosis. If they find a damaged gut they will know for sure it is celiac, an autoimmune condition that carries inherent risks with it if you continue to consume gluten. So it can be a very strong motivator when you start smelling the pizza :)

If you don't get the testing done now and just go gluten free and then start to doubt yourself, you would have to go back on gluten for at least a couple of months for the testing to be accurate, and some people find this an incredibly painful experience, so if you want the testing, now is the time. And you must keep eating gluten until all testing (including the endo) is completed.

Obviously, if you are living independently you don't have to worry about the school making meal plan accommodations for you. The only possible times being undiagnosed could be a problem would be serving in the military, getting gluten free food as a hospital inpatient, and (this one involves having the diagnosis) getting health / life insurance. Obamacare if it lasts may handle the first one and the other is an imponderable :rolleyes:

So those are the major parameters you have to consider when you think about just going gluten free and seeing if it works. Many of us on here have done just that without major problems (I was hospitalized in a coma and they were able to come up with feeding tube food for me which was allergen free - although I did become quite malnourished on it :wacko: - but it kept me alive). Good luck on making your decisions and I wish you good health. :)

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Thank you for taking the time to respond.

I didn't have enough support from my parents the first time around to see if it really made a difference. They pretty much refused to take me grocery shopping or make gluten-free food for me to eat. As I said though, now, I live in an apartment and buy and cook my own food most of the time, so I don't have to rely on my parents to do that, gluten-free or not.

I can't be in the military, ever, because I have bipolar disorder, so that is a complete non-issue for me.

I am still on my mom's insurance, and it covers most all things.

From what I've read (which was confirmed by your reply) is that in order for the testing to be accurate, you have to be consuming gluten for a period of time beforehand...so one idea I had was to wait until I'm home for spring break (which is 3 weeks away), then make an appointment to see my GP so that if they want to do any testing, I'll still have been consuming gluten, and I have time to get things done.

Honestly, I'm sick of feeling sick all the time, so I'm willing to do what I have to do in order to feel better.

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I think that you need to be assertive and insist that they do the testing. Just tell them you will go gluten free anyway and then no one will ever know, because you can't stand being so sick. Too many of us let the "thems" of this world make the decision for us, and look where it got us - years of illness because we didn't know any better. I am glad your generation is growing up aware of celiac disease and can avoid having the doctors hold the knowledge (but not enough of it) and not sharing it with us. This is all due to Mr. Internet and Dr. Google, I believe, the latter much despised by the medical profession in general (at least those who are intimidated by an informed patient who doesn't just say, Yes, Doctor :D )

Be brave, be bold! :ph34r:

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It is pretty awful feeling sick all the time. And since most of the time I buy and cook my own food, I can control my diet almost 100%...so what a doctor says won't really affect me too too much (unless celiac is confirmed -- then obviously people will take me more seriously).

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Ugh...I made the mistake of having a roll and granola this morning...I've been feeling super sick since a few hours after that. I just want to feel better!!

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Thank you. I will be making an appointment with my GP when I go home for break, and hopefully I can get things cleared up.

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The roll, while unpleasant :( , was not a mistake, because you do have to keep your gluten levels up if you want testing. Just try and do it where it won't affect your class attendance. :) Get yourself some Tums and/or Pepto Bismol and drink plenty of water, and hope you feel better quickly after thee incidents.

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I'm not a big breakfast eater to begin with, and my classes, for the most part, are early in the day, so I usually don't eat until after I'm finished with class anyway. I guess that's a good thing.

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And then, last night, I had the bright idea of ordering the $10 Dinner Box from Pizza Hut with my friend...at least I slept it off.

Spring break can't come soon enough! I would go to the health center at my school, but if they gave me a referral, it would be very difficult to get there since I don't have a car. It's easier to just do it all at home, especially since there's a lab at my GP's office, so I can talk with them and get bloodwork done all at the same time.

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Turns out I'm going home this coming weekend (the 15th). Do you think I should try to get in to my GP's office either Friday or Saturday, or should I wait until my spring break the first week of March?

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I emailed my GP and requested an appointment Saturday. Hopefully they can get me in. I can't live like this forever!

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I'm going to see the doctor on Friday, and hopefully get some answers!

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Good luck with your appointment :)

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Is coffee glutem free or not ?  Always wondered about this ............. got to have my coffee... I am new to this  , very new .........
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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