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Waiting On Confirmation...

Sarah P

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Sarah P Rookie
Sarah P
Posted

I was just diagnosed yesterday. I had my gall bladder taken out a year and a half ago. In Feb 2011 I was back in with retained stones. The pain lessened after my first ERCP but never went away. My GI did another ERCP in April but again the pain didn't ever really go away. Last week they took biopsies and said they are conisistant with Celiac. I did the blood test yesterday and I haven't heard back. Is it possible to have positive biopsy and have the blood test come back negative? I am nervous that it will and I again will be without an answer.

After I start the Gluten Free diet how long will it take before the pain goes away? I feel like I am still having gall bladder attacks, but there is nothing there. I really want to feel better.

I am also worried because all the reading I have been doing says people with celiac replace with Corn and legumes, both of which I am allergic too. Can someone please reassure me that the pain will get better and I won't starve :blink: LOL

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psawyer Proficient
psawyer
Posted

Welcome, Sarah,

There are many members here with multiple food sensitivities. I am not one of them, so I would be a poor source of advice for you. Common ones include milk, corn and soy. Corn is hard to avoid--much harder than gluten. Corn starch is very common.

Meats, fresh fruits, and selected vegetables such as potatoes, carrots, lettuce, spinach and beets are just some examples that come to mind. I didn't mention pumpkin or tomato in the vegetable list because they are actually included in "fruits" if you research them. :o

After time on the gluten-free diet, your body will heal. How long it will take depends on the amount of damage, and your age. Less damage will mean less healing time. The younger you are the faster you will heal. I had severe damage to my villi and was 46 at diagnosis. I saw immediate progress on the gluten-free diet, but continued to have symptoms for about four months.

Roda Rising Star
Roda
Posted

I was just diagnosed yesterday. I had my gall bladder taken out a year and a half ago. In Feb 2011 I was back in with retained stones. The pain lessened after my first ERCP but never went away. My GI did another ERCP in April but again the pain didn't ever really go away. Last week they took biopsies and said they are conisistant with Celiac. I did the blood test yesterday and I haven't heard back. Is it possible to have positive biopsy and have the blood test come back negative? I am nervous that it will and I again will be without an answer.

After I start the Gluten Free diet how long will it take before the pain goes away? I feel like I am still having gall bladder attacks, but there is nothing there. I really want to feel better.

I am also worried because all the reading I have been doing says people with celiac replace with Corn and legumes, both of which I am allergic too. Can someone please reassure me that the pain will get better and I won't starve :blink: LOL

Yes it is possible to be negative on blood work and positive on biopsy. Positive biopsy is a diagnosis despite the blood work results. Since you have a positive biopsy, I would go ahead and start the diet. Now that you have a diagnosis it is recommended that all first degree relatives (parents, siblings, children) get screened. They now have around a 1 in 22 chance of developing it in their life time as opposed to 1 in 133.

As far as the pain going away, you may find some relief in symptoms rather soon, but others may take longer. It really depends on your own body, how long you have had it, and the amount of damage. Some people report not feeling completly better for up to a year. The first little while can, for some people, make them feel worse. Your body is going through a lot of change and some experience a withdrawl. My boys did. They became more moody and emotionally unsettled, insomnia, and wanted to eat me out of house and home. It did gradually taper off and now they are fine. I don't recall going through a withdrawl period myself.

As far as foods are concerned you can eat meat, veggies, fruits, rice, buckwheat, millet, quinoa, nuts, and dairy if you can tolerate it. There are a lot of main stream companies that offer gluten free items now. As for navigating the first few months to a year gluten free, I would recommend getting a couple of books. Gluten Free For Dummies by Dana Korn is a good starter book. A good reference for grocery shopping is this book: Open Original Shared Link It helped me at the beginning. Welcome!

Reba32 Rookie
Reba32
Posted

it's really not that difficult to avoid corn and legumes at all. I don't particularly like corn at all, so I just don't eat it. I don't use corn meal either in any baking or cooking. I just don't like it. If you're allergic, it shouldn't be any more difficult to avoid it now that you know you have Celiac than before when you didn't know.

The best and quickest way to heal is to avoid packaged and manufactured foods anyhow, this will also help you to avoid corn and legumes. Stick with the gluten free foods that Nature made.

If you want to do any baking, you can use coconut flour (coconut is a fruit btw!), or nut flours, or rice flour. (I prefer coconut flour, it's much lower in carbohydrates, but it's spendy). There are also certified gluten free oat flours available. I personally have not tried any packaged gluten free baking mixes for cakes or cookies, (like Betty Crocker or Bob's Red Mill) though there are several available. They're too full of sugars for my liking, so I bake from scratch.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I had normal blood tests, but severe villi damage, which was my DX. I had a lot of symptoms that seemed like gall bladder, and still do occasionally.

The best I can recommend to you is to stick with with whole foods like fruits and veggies and non processed meats. If you have villi damage you won't be producing the enzyme that digests milk. If you drink milk or consume dairy products it *can* cause some bloating and gas, etc. I was told to take Lactaid or some other dogestive enzyme in tablet form so that I could still ingest it.

How long it takes you to heal will be hard for anyone to tell you. It depends on how much damage you have, where your vitamin/mineral levels are, and age.

It's best to eat smaller quantities and more frequently rather than eating a lot a couple of times a day.

I've heard that eggs help heal villi if you aren't sensitive to them.

I recommend good vitamin suppliments even if you have villi damage. You may not absorb evetything from them, but *some* is better than none,right? Take them with food to avoid tummy upset.

I had pretty severe damage and I think most of my belly pain issues lessened at first going gluten-free and by 2 months in, they were pretty much gone.

Good luck to you!

Sarah P Rookie
Sarah P
Posted
  • Author

Thanks everyone! I think I am probably just freaking out a little. I know I am making a bigger deal out of this than I should, it just feels so strange, although reducing Corn from my diet was no easy task either. thanks again.

chrissyinnj Apprentice
chrissyinnj
Posted

I had normal blood tests, but severe villi damage, which was my DX.

How did you get a doctor to do a biopsy after a negative blood test?

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

I was pretty sick when I went to the GI. She said she was going to run some blood tests and schedule a stomach emptying test and an endoscope. All of these tests were prescribed right away and done as soon as they could get me in, all within a week or so. She wanted everything done before trying to give me a DX.

I'm really glad she did it that way. If we had stopped after getting just blood work we wouldn't have gotten the answers we needed.

Once she did the scope she said it was clear immediately. Then I went back for the official result of the biopsy. She ordered more blood tests for vitamin/mineral levels at that visit.

I was glad the testing wasn't a long drawn out thing.

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