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yankeegirl

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yankeegirl Newbie
yankeegirl
Posted

Hi all! I have been browsing the boards for a few days, since my first GI appt last week. For a little background...I have been having almost constant nausea for over a year...I went to my GP 3 times about it, and we tried several several meds for reflux, and checked the gall bladder with abdominal u/s. The last visit in the middle of July, when my symptoms were getting worse, he finally waved the white flag and sent me to the GI.

Within the first 5 minutes of talking, the GI mentioned Celiac.. My symptoms that he thought were most concerning/indicative were my stomach issues, my rather severe weight loss (16 lbs this year without diet or additional exercise..down to 103 now), and the horribly itchy rash that I have on my arms, that seems to come on when my nausea is at it's worst.

We have an endoscopy scheduled for Wednesday, and while I know how how important it is to eat gluten until then, man, it's hard to eat something that might be making you sick!! I took a couple of days off, and noticed a slight improvement, then ate a few animal crackers that I was giving the kids, and felt TERRIBLE the next 2 days...could that be right?

I also had to eat oatmeal yesterday for the gastric emptying study the GI wanted to do as well, and today I feel absolutely rotten..I know oats can be good for some people, but can cross contamination be that bad?

That is truly what I am interested in knowing..from what I have read, some sites don't even list nausea as a symtom of celiac, but a few do, and I have read a few stories of ot, and my GI had no doubt that it does....I have no lower GI symptoms at all.

Also, if it Celiac...it seems as though the diet MUST be VERY strict. I am correct, right? I have a food allergy to egg, but I have no problem if something with eggs has touched something else I eat, or if it has been manufactured in the same facility. It seems that this is NOT the case with Celiac..because even the tiniest amount can foul up your system?

Can the GI see damage during the endoscopy for a preliminary diagnosis? How long for biopsy results? I just want to know, so I can get better!

Lastly, if it is, and I go 100% gluten free...how long til I feel better?

Thanks SO much for listening to my story, and for any info that may help me understand better...

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psawyer Proficient
psawyer
Posted

Welcome,

Only in severe cases can the damage to the villi be seen. Usually you need to wait for the biopsy. My endoscopy was on a Friday, and I had the results the following Thursday. The doctor had them Tuesday.

How long it will take to feel better depends largely on how much damage there is. I saw improvements right away, but continued to have regular symptoms for a few weeks.

rosetapper23 Explorer
rosetapper23
Posted

Be aware that people who have the rash (Dermatitis Herpetiformis) tend to have spotty damage in their villi, so oftentimes the biopsy comes out negative. Suggest to your gastro that he should take a minimum of eight specimens. You also have a second option: Rather than undergo an endoscopy, you may be able to find a dermatologist who knows how to correctly biopsy for Dermatitis Herpetiformis (DH). If you are so lucky to find such a rare animal, a positive biopsy for DH means that you have celiac disease. End of story...and a lot less invasive. If you find a dermatologist who claims to know how to biopsy DH, watch closely--the biopsy needs to be taken of CLEAR skin just adjacent to a lesion and NOT of a lesion itself; otherwise, the biopsy will come out negative.

Also, you're correct--you'll need to adhere to a VERY strict gluten-free diet and never cheat. Oftentimes, people with DH are super-sensitive to gluten contamination. By the way, in order to hasten the clearing of your DH, you may need to avoid iodine as well as gluten. Make sure that the salt you're using is non-iodized, and don't eat salty snacks (crackers, popcorn, nuts, french fries, chips, etc.), seafood, asparagus, and sometimes dairy (depending on where you live in the U.S.). Sometimes just getting rid of the iodine helps the sores heal. Good luck!

nvsmom Community Regular
nvsmom
Posted

I'm sorry to hear you've been so unwell. I hope going gluten-free helps you quickly since your symptoms do sound like celiac and dh.

I've been gluten-free for two months and I've been glutened twice by miniscule amounts. One was from a gluten free menu in a restaurant (I have no idea what got me) and another was fro a "gluten-free" beer that was gluten free to less than 3 parts per million, which is less than a crumb. A strict gluten-free diet is definitely needed.

Good luck with your endoscopy on Wednesday. I hope you get your results back quickly.

Did they run a celiac blood panel on you too? You might want to request that before going gluten-free.

I felt better about a month after going gluten-free. It probably would have been sooner if not for my accidental glutenings. No more stomach aches, bloating or migraines; and my muscle and joint pain is starting to subside after two months. There are quite a few celiacs who had the nausea too; you're not alone on that one.

Best wishes!

yankeegirl Newbie
yankeegirl
Posted
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Thanks so much for the info! I will definitely talk to my GI about how many samples he will take, and doing the blood work as well. I do definitely want to get the endoscopy, because I have had a suspected ulcer since I was 18 (and my GI thinks that has always just been celiac manifesting as ulcer pain)...but we want to eliminate ulcer as a part of this as well :)

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