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wendstress

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wendstress Rookie
wendstress
Posted

I'm at the point of information overload.

What brought me into my Dr: ~9 months of intermittent diarrhea

Now, I also realize I was dealing with: Fatigue, abdominal cramping, possible depression, "brain fog"

(When you deal with them for so long they sort of become normal, you know?)

Test Results:

TIS TRANSGLUT AB,IgA 89.8 - U/mL

Reference range: 0.0 to 10.0

TIS TRANSGLUT AB,IgG 1.1 - U/mL

Reference range: 0.0 to 9.0

Lots of other tests were run, but all were Negative. At the visit, my MD said he thought my symptoms indicated colitis, but would run a panel of tests to rule things out before referring me on for a colonoscopy. After reading through a bunch of your stories, it sounds as if I am pretty lucky that this was run from the start.

So I am assuming with the high TTG IgA that confirms the Celiac?

My Dr. said I should pursue a "Low Gluten" diet. I asked him to clarify and he said to shoot for "No Gluten", but gluten was everywhere and it would be very hard to be 100% gluten-free. I'm set up to meet with a nutritionist in 2 weeks.

I've done my best to eliminate the obvious sources of Gluten, and am trying to learn about the less-obvious sources. I actually have a little more energy than I've had in a long time.... I feel like the brain fog (which I didn't even realize I had) is lifting.

Any advice on how to get started gluten-free in the early stages? I've been living on rice cakes, chicken, and Rice Chex for the past 4 days. Finally got to the grocery store tonight and got stocked up on veggies and fruit.

Thanks!

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Tallforagirl Rookie
Tallforagirl
Posted
I'm at the point of information overload.

What brought me into my Dr: ~9 months of intermittent diarrhea

Now, I also realize I was dealing with: Fatigue, abdominal cramping, possible depression, "brain fog"

(When you deal with them for so long they sort of become normal, you know?)

Test Results:

TIS TRANSGLUT AB,IgA 89.8 - U/mL

Reference range: 0.0 to 10.0

TIS TRANSGLUT AB,IgG 1.1 - U/mL

Reference range: 0.0 to 9.0

Lots of other tests were run, but all were Negative. At the visit, my MD said he thought my symptoms indicated colitis, but would run a panel of tests to rule things out before referring me on for a colonoscopy. After reading through a bunch of your stories, it sounds as if I am pretty lucky that this was run from the start.

So I am assuming with the high TTG IgA that confirms the Celiac?

My Dr. said I should pursue a "Low Gluten" diet...

You're right, the Tissue transglutaminase IgA positivity is a very strong indicator of Celiac disease. Before you go gluten-free, or gluten-lite, ask for a duodenal biopsy (performed via endoscopy). This is a very straightforward, painless procedure, but is important to confirm diagnosis of celiac disease.

I think what your doctor is trying to say is that it's virtually impossible to elimate ALL gluten from your diet, because inevitably it exists in trace quantities, even in "gluten free" products (apart from food such as fresh fruit, veg and meat which are naturally gluten-free). He should still order a duodenal biopsy for you though, before advising you to start the diet, as you will need to be on gluten for the biopsy result to be accurate.

More useful and accurate information can be found here: Open Original Shared Link

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the gluten free world. If you do choose to have a biopsy done, and it is your choice, do not stop eating gluten until after the procedure. The is a chance of a false negative with those even on a full gluten diet. You would still need to do the diet no matter what the results were. With that high of a blood test result many doctors are now forgoing the need for an endoscopy to confirm and it sounds like your doctor is one of those.

There is a lot to the dietary and lifestyle changes but you have come to the right place to learn about it. You will be amazed at how many things can have gluten hidden in them. One of the best ways to figure out what name brand stuff is safe is to enter the products name and the words gluten free in a search engine. Often the company's gluten statement will be one of the first few results. Some companies can be trusted not to hide gluten ingredients in natural flavors, like Kraft and Unilever, and others can't like the company that makes Rice Dream products for example.

Do be sure to check your toiletries and makeup, shampoos, lotions etc can all contain unsafe ingredients. Check all meds, script and OTC and also check all supplements.

You may have some ups and downs for a bit, many of us do, but it will get better. You may also find a sublingual B12 makes a big difference in energy and mood.

Do ask any questions you need to and I hope you heal quickly.

Tallforagirl Rookie
Tallforagirl
Posted

I would have the biopsy anyway, just to be sure there isn't anything else going on. Of course it is a choice, like any other medical procedure.

rinne Apprentice
rinne
Posted

In my experience it is wise to check for the possible down side of any invasive testing, making an informed choice that balances risks with benefits is smart but that's just my opinion.

This is a great board with lots of resources. Welcome. :)

wendstress Rookie
wendstress
Posted
  • Author

Thanks for your responses - with 2 small boys at home (3 and 1) I have limited time to get on-line so I realize it has been a few days...

A few questions:

1) Shampoos, lotions, etc.....can these cause a problem, too???

2) Supplements? Someone mentioned B12, how about probioitics, too (as long as they are gluten free?).

3) Fast Food? Due to my job, I often have to eat on the go..... I tried Taco Bell on Monday only to find out that the meat has wheat in it, and it hit me hard.

4) Biopsy - I'd personally prefer to try to be gluten-free for awhile and see what happens. I've been trying very hard since the diagnosis (and learning along the way...). I'm feeling a little better, and really don't want to return to where I was.

wendstress Rookie
wendstress
Posted
  • Author

Thanks again!

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rinne Apprentice
rinne
Posted
Thanks for your responses - with 2 small boys at home (3 and 1) I have limited time to get on-line so I realize it has been a few days...

A few questions:

1) Shampoos, lotions, etc.....can these cause a problem, too???

2) Supplements? Someone mentioned B12, how about probioitics, too (as long as they are gluten free?).

3) Fast Food? Due to my job, I often have to eat on the go..... I tried Taco Bell on Monday only to find out that the meat has wheat in it, and it hit me hard.

4) Biopsy - I'd personally prefer to try to be gluten-free for awhile and see what happens. I've been trying very hard since the diagnosis (and learning along the way...). I'm feeling a little better, and really don't want to return to where I was.

Yes, you need to avoid gluten in all forms and that includes shampoo, etc.

Many people take probiotics, gluten free, also the B12.

Sorry can't help with fast food but perhaps others can.

I understand about the biopsy, mine was scheduled for five months after (our wonderful Canadian health care system, not!) I was told about Celiac and there was no way I was going to eat gluten again so that I could damage myself and they could see the damage. Diet alone may be used as a diagnostic tool, as in you get better not eating gluten, you have a problem with gluten, doh!

I hope you continue to feel better. :)

happygirl Collaborator
happygirl
Posted

A biopsy won't be able to confirm Celiac after you have gone gluten free for an extended amount of time.

Based on your symptoms, and your bloodwork, it would be likely that you have Celiac and gluten is a problem for you.

Many of us have to eat on the go - we find safer alternatives or bring our own food.

If you have Celiac, you need to go gluten free, not gluten lite. Lots of people are gluten free.

home-based-mom Contributor
home-based-mom
Posted

In general, eating gluten-free away from home is difficult at best. Remember how clueless you recently were? Most other people still are.

While most natural food in its original stste is gluten free, gluten contaminates a lot of things during processing and handling. Therefore food prepared by others should be considered unsafe for you.

Fast food places can be among the worst.

You can check the websites of the places you have been frequenting to see if they have any gluten free items, but you should observe the handling before making your purchase. for instance, the salad may be listed as gluten free, but if the employee handles buns and cones with the same hand (gloved or not) that serves up your salad, the salad is no longer gluten free.

Bring your lunch with you. It's no only safe to eat, but much healthier, too! :)

nora-n Rookie
nora-n
Posted

Here in Europe, they would tell you to stay on gluten and they would do the endoscopy to check for celiac and possibly other things. they also need this to have something to compare to if you happen to not get better, or not get well enough.

Please do not settle for low-gluten, just stay off gluten.

It is very similar to eating low-carb and cooking low-carb is many ways, and we can often use most recipes in low-carb cookbooks....so I find it not so awkward or difficult.

You might have to bring your own food sometimes.

It might also be good to have the biopsy and official diagnosis done so you have something to fare with re. family and co-workers who think you are on a fad diet and can just cheat.

But I agree that your ttg numbers are pretty high and this is celiac for sure. They sometimes are not sure if the numbers are just borderline, but high numbers are sure.

nora

Tallforagirl Rookie
Tallforagirl
Posted
Yes, you need to avoid gluten in all forms and that includes shampoo, etc.

Note that gluten can't be absorbed through the skin, so don't stress about the shampoo, lotion etc, unless you think you'll ingest it.

Open Original Shared Link

  • 3 weeks later...
rinne Apprentice
rinne
Posted
Note that gluten can't be absorbed through the skin, so don't stress about the shampoo, lotion etc, unless you think you'll ingest it.

Open Original Shared Link

There are many of us who do have a problem with gluten in personal products. Personally my skin gets very irritated if I use anything with gluten in it.

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