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Hello And Help Needed

Diosa

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Diosa Apprentice
Diosa
Posted

Hi all. I'm new here and really could use some advice. I'll try to keep this as short as I can. :)

Last October I started having some really bad food issues. I had been trying to lose weight and first did WW, then SBD, then back to WW and then SBD, then nothing. After about 3 weeks I would get amazingly ill and could barely function on any of these diets. October is when it really reached a head. I was constantly ill, cranky, migraines and the like. It totally ruined the visit with my future in-laws, let alone the holidays. January I went back to low carb/surgar-free. It didn't help. So I cut all sugar out of my diet, along with all processed flours and that helped some, but I was still not totally there. Two months ago, right after my fiance had his appendix rupture, I started having severe pain in my right side. Everyone thought it was gall bladder but every test showed up negative. They also thought ulcerated colitis (but not very seriously), Crohn's disease (also not extremely seriously), IBS, ulcers, and gastritis. So far, all have been ruled out. I've had a couple more ER visits due to pain and doctor appointments galore, when someone thought it was possible I had celiac sprue. So I decided to cut all wheat out of my diet (still sugar-free mind) and for the last two weeks I've felt so much better. The pain is at a manageable level finally, and I have more energy than I have in 2 months. But the problem is, the test results came back negative. I don't know what he ran, just one test for the antibodies. I had eaten a piece of white bread the night before and was totally incapacitated from the pain (even painkillers didn't totally alleviate it)

So could it still be celiac or am I going in totally the wrong direction? I admit I feel better when I don't eat wheat/gluten. The good news is I love to cook so I can avoid some of the hidden stuff, but I really don't know where to go or what to do. I've never experienced anything like this before, nor do I know anyone with it. Any help/advice/direction/support (if I can be so bold) would be appreciated.

Thanks,

Beth

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Carriefaith Enthusiast
Carriefaith
Posted

Welcome,

How long were you on the diet before you got the blood test done? Sometimes being on the diet can give false negative results. Personally, I think that you may have a wheat allergy, gluten intolerance, or possibly celiac disease. You can get blood tests and skin prick tests for wheat allergy. Also, you can get the celiac gene test to see if you have the gene for celiac. Hope this helps B)

I had eaten a piece of white bread the night before and was totally incapacitated from the pain (even painkillers didn't totally alleviate it)
The last few times I believe I was glutened I had severe pain and painkillers will not help it either. I just have to wait it out. I've tested postive for celiac disease and wheat allergy.
Guest nini
Guest nini
Posted

Beth, it sounds like you are going through a lot of what I went through prior to dx... So to answer your question, Yes it could be celiac... If you are feeling better without gluten, then by all means stay off of it... If you feel like you need to have accurate testing done then most would advise you to stay on gluten until you get all your tests (blood, biopsies) completed... My personal opinion is this, If gluten makes you sick and you feel better without it, Do you really feel like you need a test result to give you your answer? Your body is trying to tell you something.

I went about a year of getting extremely ill and thinking I was dying and ending up on all kinds of medication and having all kinds of tests run and no answers until I went to a GI doc that said that he was 99.9 percent positive I had celiac based on my symptoms, including not being able to lose weight despite dieting, in fact one diet a certain dr. put me on made me gain 10 plus pounds in less than a week... I too had eliminated sugar, and dairy (all but wheat!) before I found out that gluten was the culprit. I have since lost over 65 pounds and went from a size 3X to a 14-16!!!

Good luck with it all. And keep in mind you may have more than one food intolerance, like dairy or soy or corn, but gluten is a biggie. I think lots of people are intolerant of gluten and it causes a ton of health issues besides celiac.

Diosa Apprentice
Diosa
Posted
  • Author

Thanks guys!!

I've only been gluten free for 2 weeks (only a week before I was tested), but it's made a world of difference, so long as I don't eat any by mistake.

My nutritionist warned me that corn, soy and rice weren't really good for me, and I have to agree with the corn and soy. Soy makes me feel ill, and cornflakes flared up the pain. But rice/rice flour seems to be ok.

I guess you guys are right. I don't really *need* the test results. It's the geek in me wanting straight up answers. That's all it is. :) It's just been such an ordeal (as I'm sure you guys will understand). I'm supposed to go talk to the specialist in late July (gastro guy) so I may bring up the gene test. I know they want to do the scope, so if there's damage he could see and do a biopsy while he's in there.

Right now its just learning how to cope, and what I can eat. I know meat, dairy and cheese don't give me too much hassle and eggs seem ok. I don't dare go near veggies without probiotics, and I don't like fruit (hence the reason going sugar-free wasn't too hard). I seem to do ok with Malitol and the other sugar alcohols as well.

I guess I just feel lost since all this shook down.

nini, what is dx? :) Diagnosis?

Carriefaith Enthusiast
Carriefaith
Posted

If eating gluten causes you that much pain, then it probably isn't worth putting yourself through tourture just to get tests done.

only a week before I was tested
I don't think 1 week would be long enough for the antibody levels to drop too much, but I'm no doctor so maybe it is. I think you definately have issues with gluten though based on your symptoms.
Diosa Apprentice
Diosa
Posted
  • Author

You defiinitely have a point. :) It really isn't worth the pain, just to get a test result. I know the DH will agree with that.

It realy does seem to be gluten. With low carb I was still eating wheat bread. As soon as I stopped, the pain eased. I actually had 2 pain-free days (the first in 2 months). Then I hit something with gluten as I felt bad again, but it really seemed to drive home the point.

Now I guess it's a case of how do I find the hidden gluten stuffs? I'm sure this has been covered on here, so you can just point me in the right direction. ;) I mean, I know anything with grains, but what is some of the weird stuff that you wouldn't expect?

Carriefaith, how did you find out about dairy? I noticed you were dairy-free too.

Carriefaith Enthusiast
Carriefaith
Posted
I'm sure this has been covered on here, so you can just point me in the right direction. wink.gif I mean, I know anything with grains, but what is some of the weird stuff that you wouldn't expect?

Check for gluten in everything, like toothpaste, shampoo, suncreen, make-up, ect

Here are some good lists

https://www.celiac.com/st_main.html?p_catid...-11105003216.b7

Carriefaith, how did you find out about dairy? I noticed you were dairy-free too.
I noticed problems with dairy before I was diagnosed. I just get very gastro-intestinal "sick" when I have anything with dairy in it. I have to avoid dairy just like gluten or else I could get very sick. Lactose/dairy intolerance is common in celiacs until the gut heals; however, many continue to have issues with it after the gut is healed, like me :lol:
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julie5914 Contributor
julie5914
Posted

Did you have organic corn flakes or other? All Kellogs cereals (including corn flakes and rice krispies) have malt flavoring (barley) in them as far as I know.

Diosa Apprentice
Diosa
Posted
  • Author

AH!! I didn't know that. It was Kellogg's. I'll definitely try organic corn flakes then. Any particular brand you recommend?

KaitiUSA Enthusiast
KaitiUSA
Posted

Yes, kelloggs contains gluten but there are great alternatives. Envirokidz has some gluten free cereals(the ones that are gluten free are marked on the front) Also, fruity and cocoa pebbles by Post are gluten free :D

Carriefaith Enthusiast
Carriefaith
Posted

Envirokidz are great. I have their frosted flakes now and I really like the Panda Puffs.

tarnalberry Community Regular
tarnalberry
Posted

And Nature's Path has corn flakes with an interesting (in a good way, to me) texture - the flakes are much thicker and crisper than Kellogg's.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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