Newly Diagnosed

[Emilydeaconx]

Hey

 

For the past 2 weeks i have been feeling very very dizzy, shaking, belly cramps, nausea the lot. So bad that i’ve called the hospital the other night because i couldn’t walk. I was told 2 weeks ago that there’s a definite chance i’m coeliac but i am currently waiting on a letter for an appointment for the biopsy. Due to my symptoms the consultant at the hospital told me to stop eating gluten for a bit as the biopsy could take a while. I have been gluten free for only 1 day and obviously still have dizziness and cramps, does anyone know if these will disappear within a couple days? i have had 2 weeks off work and i can’t really take anymore time off so i’m praying these symptoms will disappear soon!! Please could someone help?? 

[Ennis-TX]

Varies from person to person, my symptoms change but vary from vomiting, diarrhea, motor control loss, numbness, constipation, and bunches of small other things that are always changing. The initial pain and vomiting pass in a day or, then the pain and D or C come and go for weeks, the numbness I get can last months slowly lessening.

You issues might depend on the cause, are the symptoms related to the nutrient absorption from damaged intestines? Then you have to supplement and it can take 4-12months or more to heal your gut. IF they are caused by the raised antibodies it can depend on how strict you diet is and how your immune takes to wind down. I have seen members be over it in a week...some still have issues 4months later as it slowly goes down. Your really just going to have to wait it out and see. By the way the medical gluten free diet is very strict....you have to replace scratched pans, cutting boards, pots, colanders, new condiment jars, throw out wooden spoons, etc. Sort of a decon phase cleaning everything out is gluten is a protein smaller then a germ...and bleach does it kill it, its like blood were a CSI tech can still find it. 500F+ will destroy it so the oven self clean cycle can be used to decon some pans, cast iron, etc. Might be useful https://www.celiac.com/forums/topic/91878-newbie-info-101/

But as a heads up, you will be having to eat gluten every day at least 2 weeks before they do that endoscope. Via the gluten challenge. Open Original Shared Link

 

[GFinDC]

Hi Emily,

You don't have to eat a lot of gluten each day for the antibody testing to work.   Usually they say a single slice of regular gluten bread is sufficient.  So you could cut down on it like that and your symptoms might not be so bad.  Another thing you could try is avoiding all dairy and soy for a few months.   Celiac affects our ability to digest dairy and that by itself can cause many unpleasant symptoms.  Soy is not good for the gut and may retard healing.   Soy lecithin is not a big problem though.

You can also try taking probiotics and Pepto Bismol.  They may help some.  If you are having lots of gas avoiding sugar and sweets is helpful.

It's helpful not to quit eating gluten before the endoscopy.  Going off gluten for a month or so and then going back on it for testing can be very unpleasant.  Possibly worse symptoms than you have now.

A diet of mostly whole foods is helpful for healing.

[pikakegirl]

I did not have any help after diagnosis but if i could go back and give myself help i would tell myself that healing takes lots of time so buckle up and learn to be patient. The body is strong and is healing the minute the gluten is eliminated. However the gi is weaker and mine full of candida as well as malabsorption problems like leaky gut. I found my bifida was gone so probiotics are a daily need to breakdown vital food. I finally went on an elimiation diet and it did wonders to calm my bowel habits. I could have avoided major pain if i had known i could not convert folic acid and b6. Also eliminating processed foods also took all the vitamin fortification from my diet. Now from genetic test for MTHFR i do lmethyfolate 3000k daily and d3 from fish source, bluebonnet 2000iu daily. Also b vitamins separetely. B12 in liquid from live wise though blood work was normal pernitious anemia is a problem in Celiacs. B6 as p5p since problems converting. Love life extension, now, live wise and solgar brands for least binders which irritate. All from Amazon since i live in a remote area. My k2 was low also. Demand a vitamin panel from drs and list them for the dr. Malnutrition has many symptoms which i found were a major cause to not feeling better. Last note check the thyroid. I knew i had hasimotos but the healing process put my doseage out of whack sending me to hospital for wild symptoms, just needed close monitoring and adjustment over the healing years. Hope some of this give you ideas, you are your best healer.