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Pre-diagnosis?

grainfree

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grainfree Newbie
grainfree
Posted

Hello. After eating a meal of penne pasta on Friday night I literally passed out - again. I made an appointment to see my GP today. Don't know whether it's celiac or something entirely different - I do know I'm tired of being tired! Reading some of the posts here helps me to know I'm not the only person with the same symptoms. Thank you! I had Graves in '83 - bread averse pretty much my whole life - and now more symptoms. I used to be able to eat all foods without a problem but now it is becoming a problem. The more that I pay attention to my body the better I feel so I at least know this is a start. Thanks all for sharing! Any input would be appreciated. Thanks!

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grainfree Newbie
grainfree
Posted
  • Author

Well, I started a lactose elimination diet today. So far my nose has run after a meal of whole wheat tacos. Go figure. I'll try two weeks as I am so looking forward to feeling better. Great place to talk about how you feel. Thanks.

GFinDC Veteran
GFinDC
Posted

Hi Grainfree,

Doing the dairy free diet is a good start. Dairy can cause plenty of GI symptoms all by itself, if you are lactose intolerant. Which plenty of us are.

You might consider eating some barley cereal to see if that causes a reaction also. Since you have had a thyroid problem also it seems to me that raises the likelihood of you having celiac.

I suppose another possibilty is diabetes with the fainting. But do you have a similar reaction when eating sweet sugary things? If not then it seems more likely it is a gluten reaction.

If you can get to a doc and have the celiac antibodies test panel done that might help you narrow things down. You need to still be eating gluten for the test results to be accurate. But cutting out dairy should not affect the results.

Anyway, welcome aboard!

grainfree Newbie
grainfree
Posted
  • Author

GFinDC, thanks for reading my posts and for replying. Thanks for the welcome. I appreciate the information and support from this board. Don't know if its celiac or allergy. Know I want to feel better! Day 1 lactose-free shows no diarrhea. That's something. Don't want to think there is automatically a underlying disease but I do know I want to feel better. The home celiac test I took today came out inconclusive (no control bar on the substrate where there should have been at least that). I'll continue on the elimination diets at least for now. The barley cereal is a great idea and one I'll likely try in the next coming days. I so appreciate being able to post and to read others' experiences. I'm going to concentrate on the elim diets for now and hope for the best!

GFinDC Veteran
GFinDC
Posted

Hi Grainfree,

Dairy free is the way to be! Sounds like a bumper sticker. That's great that it might be helping. You could stick with the diary free for a week or 2 and then challenge yourself with it. If you just have lactose intolerance you can probably get some relief by taking Lactaid too. Some of us also have casein problems though and there isn't much that can be done for that. Except eating dairy free cookies. :)

It can be hard to tell what food is causing a reaction at first. Especially if you are eating lots of different processed food items each day, each with it's own long list of ingredients that sometimes sound like food. That's why a lot of people recommend going on a whole foods diet vs processed. You can start with a simple list of 5 foods to eat for a few days and then add one food every couple days and track your reactions. If you want to get the celiac testing at a doctors you'll need to keep eating gluten until the blood is drawn. But if that isn't important to you then going gluten-free now and doing an elimination diet makes sense.

Maybe it would be worthwhile to ask the company about the home test result? They might be able to explain the reading you got.

grainfree Newbie
grainfree
Posted
  • Author

Um, anybody have fun with red beets??? Jeez. It was only less than a cup and it's still running through me two days later.

Just need to rant. Smoked meat on RYE bread with mustard a little bit ago. Cannot stay awake. The lactose free diet - I do see a difference but the other symptoms are still there. Luckily this is a treatable condition but what a headache. :angry:

GFinDC Veteran
GFinDC
Posted

I hardly ever do beets myself, so not much help there. I don't remember having a problem with them. Carrots reared their ugly head to me recently. I have eaten them with no problem (that I noticed) until a couple weeks ago. But no more, they decided to get me and I gave them up.

The rye bread should affect you if you have a gluten problem. So that kind of leans towards celiac I think. I think most rye bread is made with some wheat flour also to help it rise. If so that wouldn't be a pure test for a rye only reaction.

I wonder if you could find a health food store to sell you small samples of rye and barley flour or bulk seeds? That might be a ways to get a more pure test reaction. But you would need to be gluten-free for a week or two to know you were reacting to just the rye or just the barley. It takes a little while for the gut to settle down after going gluten-free. Then it is usually much easier to detect a reaction once you are somewhat stabilized. It's much easier to stay on gluten if you are going for an official doctor diagnosis though. Otherwise if you stop eating gluten and want a diagnosis later, you have to start eating gluten for a matter of months they say, to build up the antibodies to a level the tests will detect. That can be no fun if it causes severe reactions. Reactions are often stronger atfer being gluten-free awhile.

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  • 2 weeks later...
EJR Rookie
EJR
Posted
Um, anybody have fun with red beets??? Jeez. It was only less than a cup and it's still running through me two days later.

Just need to rant. Smoked meat on RYE bread with mustard a little bit ago. Cannot stay awake. The lactose free diet - I do see a difference but the other symptoms are still there. Luckily this is a treatable condition but what a headache. :angry:

Count me in! I ate 1/3 of a cup of garden fresh red beets and had severe abdominal bloating all night and then terrible, painful stomach cramps and burning and lots of diarrhea this morning. Gut still hurts this evening, feels like I must have swallowed a cup of crushed glass.

Joyce

grainfree Newbie
grainfree
Posted
  • Author

Joyce, I'm so sorry to hear how severely unwell you have felt. I have found in those instances of extreme pain that going to the basic diet - lean meat, fish, fruit, veggies, seeds and nuts - has made me feel better. Since I last posted there has been blood test and biopsy proven celiac disease diagnosed in 1st degree relative. I am now "loading" gluten daily (feel absolutely horrible because of it) in preparation of further testing.

Did you read the Slate article? Until one experiences a disease, condition, adverse event in their life, it is just not understood by others. Joyce, I do hope you are feeling better. I have since avoided beets. I pretty much just stick to the same foods daily to avoid any other stomach upsets right now.

  • 3 weeks later...
grainfree Newbie
grainfree
Posted
  • Author

Oh peanuts. Itty bitty peanuts. Is it you which is causing my reaction? 37 minutes to regain steady breathing. A bit scary

tarnalberry Community Regular
tarnalberry
Posted
Oh peanuts. Itty bitty peanuts. Is it you which is causing my reaction? 37 minutes to regain steady breathing. A bit scary

If you experienced trouble breathing after eating peanuts, do NOT eat them again, and head directly to an allergist who can help you determine (SAFELY) if you have a peanut allergy. Difficulty breathing is a sign of anaphylaxis, and you don't have to have severe anaphylatic reactions to something for them to become severe the next time you eat the offender. If you're experimenting with things causing allergic reactions, PLEASE work with an allergist on it!

grainfree Newbie
grainfree
Posted
  • Author

Hi Tarnalberry, thanks for your concern. Peanut is something new? Situation would be different if the "offenders" are known, then easily avoided. Thanks again for posting - this one was shaky. I'm still feeling the effects five hours later. BTW still waiting for EMA result.

grainfree Newbie
grainfree
Posted
  • Author

A very, very heavy sigh. It certainly was not the news I wanted but relieved to know something can now be done about it. A positive EMA. Sigh. Off to post-diagnosis. Thanks all for following. I feel like a member now?

  • 1 month later...
grainfree Newbie
grainfree
Posted
  • Author

I probably should have just started a blog but, whatevah. I'm still (two and a half months later) in the throes of disbelief about celiac disease. Thank goodness I have been able to rant about it here. I'm just finishing up the latter part of testing (endo/biop) but I already consider myself diagnosed. I wish you all very good health!

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