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New Here, Worried I May Have celiac disease

kara-leigh

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kara-leigh Newbie
kara-leigh
Posted

Lately I have been having a lot of ulcers in my mouth, so I was looking up reasons for them tonight and I came across a LOT of interesting information. First, I learned that Celiac Disease can cause them. Then I found out that since I have Addison's Disease, that puts me at a higher risk of developing celiac disease. THEN, I found out that celiac disease can cause seizure disorders. A couple years ago, out of nowhere, I started having partial complex seizures, but nothing showed up on my EEGs, strobe tests, or anything like that (which made my doctor "label" them as just a general seizure disorder in my charts, but he told me they were partial complex), and medication does not control them at all.

Now I am really worried that I have celiac disease.

The other symptoms I have are:

-Almost constant diarrhea (which is often fatty/greasy), but when it isn't it is constipation.

-Abdominal bloating. I'm a thin person, but my lower abdomen sticks out more than it really should, and I can't suck it in.

-Anemia

-Recently lost almost 20lbs, and made no change in my diet or lifestyle

-Dental enamel problems

-Osteopenia, diagnosed right as I was diagnosed with Addison's about 7-8 years ago (I'm currently 34y/o). Have not been tested since then so I'm not sure if it has progressed to Osteoporosis. It probably has, as I have been on corticosteroids since then. The Osteopenia was not attributed to that, b/c I hadn't been on it long enough at the time it was discovered.

-Joint pain

-Long term infertility, been TTC for 12 years

-Depression

-Mouth ulcers

What do you think? I'm really worried b/c everything I love to eat is on the prohibited list. *cry* That should make it easy for testing, though. LOL

Do you think getting tested can wait a month or two, though? My husband is in the process of getting a new job, he just has to take the drug test and physical. I don't want to get tested now and have it be considered a pre-existing condition with the new insurance. Kwim?

Once I do look into getting tested, do I just go to my regular doctor, or what kind of specialist would I get a referral to? Thanks!!

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1desperateladysaved Proficient
1desperateladysaved
Posted

:unsure: Well, I think the forum may help you to decide what to do. I just want to explain that we don't quit eating; we find substitutes. They are excellent!

Instead of milk: Coconut milk, or almond milk

Instead of wheat flour: almond, coconut, or buckwheat.

I haven't been disappointed with the tastiness of my food and it improves my health besides.

I want to welcome you and to say, Get Better Soon. I am excited to hear about your progress through this.

DT

MitziG Enthusiast
MitziG
Posted

yes, you likely have celiac. Yes, you can wait a month or tow to be tested, but do NOT go gluten free until after testing as it will cause a false negative. And please know, testing doesn't always identify celiac (misses 30%) and does not identify gluten intolerance. So once all testing/ endoscopy is done, try the diet regardless of results. I suspect you will find relief!

GottaSki Mentor
GottaSki
Posted

Welcome!

I know it sounds overwhelming at first - gluten free can be rough until you learn the ins/outs and how to replace/replicate all your favorites. It does get easier as time passes.

You have had very serious symptoms -- if removing gluten is the answer to your improved health, I think you'll be quite pleased that you can improve by just changing your diet. If it is Celiac Disease, you will not get better only worse until you remove all gluten.

Testing can wait if necessary -- highly suggest taking this time to start learning about living gluten free. You must stay on gluten until testing is complete. Considering your symptoms, I'd suggest giving gluten-free a serious three to six month trial regardless of your test results -- false negatives are possible in both the blood and biopsy results.

Good luck to you!

kara-leigh Newbie
kara-leigh
Posted
  • Author

I will definitely wait until I get tested to remove gluten. If anything, if going gluten free gets rid of my seizures I will be happy. Anything else will be a bonus.

The thing I worry about with food, is that we eat a LOT of pasta and bread (sandwiches) b/c they are inexpensive. Do they make gluten free pasta? I don't drink milk, haven't for almost 13 years. I do use it to cook and eat cheese in sandwiches and other dishes, though. I'm also worried about going out to eat, though we don't do it often, and eating over at my parents' house. My mom thinks that all of my medical issues are in my head, and I KNOW she will refuse to stick to a gluten free diet, even if just for me.

GottaSki Mentor
GottaSki
Posted

Yes, there are many gluten-free pastas - most made with rice or corn or combo of rice/corn. Some are quite expensive, but you can find them at affordable prices depending on where you live - Trader Joes, some Walmarts, Amazon are some of the less expensive places.

Yes, there is gluten free bread. Udi's and Canyon Bakehouse are my family's go to breads - these are more expensive than gluten filled bread, but worth it. When we first went gluten-free we made all our bread in a breadmaker which can save money.

Milk/dairy items do NOT have gluten in them -- many suggest removing or limiting dairy when first gluten-free because it can be difficult to digest dairy along with alot of gluten free processed items out there while healing. The best thing to do is eat simple foods at first to encourage healing: Meat, Vegies, Fruit, Rice.

As for family - they usually learn right alongside you. While going thru the transition they may say some things that seem like they are skeptical, but once your health starts improving it is hard to deny the correlation between gluten and your symptoms. Give it time -- the best bet is to bring your own food to family and friends homes because it is nearly impossible to have safe foods prepared in a gluten filled kitchen. As for going out to eat - you will learn how/where to order the best gluten-free meals, but again the safest bet is to bring your own when in doubt.

Hang in there...the learning curve is very tough - I was extremely frustrated and even shed tears right in the grocery isles during my first months gluten-free and I am not alone with stories of tough transition. You will figure it out...it does get much, much easier with time.

kara-leigh Newbie
kara-leigh
Posted
  • Author

It will help that we eat a very simple diet to begin with. I do not like the taste of prepackaged and frozen foods, so most of our meals are made from scratch for the most part.

I know that the grocery stores that we shop at here have a good "special diets" section, but I'm not sure about where we will be moving to. I know there is a Whole Foods about an hour away.

When I mentioned this to my husband this morning, he acted like I was crazy. His friend has it, and when I was telling him about my symptoms and came to the diarrhea, he said "No, you have to be bent over in pain b/c of it." Is that true?

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GottaSki Mentor
GottaSki
Posted

No. There are many, many symptoms of Celiac Disease. It is hard to find two celiacs with identical symptoms - we come in all different sizes, shapes with a large variety of symptoms.

Here is the deal -- Celiac Disease MAY be the cause of all your very serious symptoms -- it can't hurt to rule it out thru testing and trial diet.

Your husband's reaction is quite normal - there is a lot of misinformation regarding Celiac Disease out there. At least he has heard of Celiac because of his friend - that is a great place to start :)

kara-leigh Newbie
kara-leigh
Posted
  • Author

Exactly. It can't hurt. Even if I don't don't show as having Celiac Disease, I will definitely go gluten free as much as I possibly can just to see if it helps.

kara-leigh Newbie
kara-leigh
Posted
  • Author

I've been reading through a bunch of threads today, and a couple people have mentioned hair loss. Is that a symptom? I've always been a huge "shedder", but just in the past couple weeks it has been TERRIBLE. To the point where, while shampooing and when I'm drying off, I pull a handfuls of hair off my head. I have no clue why I still even have hair. I'm just wondering if I should consider this one of my symptoms or if I should look into something else.

beachbirdie Contributor
beachbirdie
Posted

There are a lot of things that can contribute to hair loss. It could be as simple as nutritional deficiency from malabsorption of nutrients, it could be a hormone shift.

When you get settled in with a new doc, be sure that a good thyroid test is included. That is one of the very common causes of hair loss and other symptoms. Make sure to get a TSH, Free T3 and Free T4.

kara-leigh Newbie
kara-leigh
Posted
  • Author

Well, we found out today that my husband's job offer fell through. We want to get some things wrapped up here, like selling our house, before he sends his resume out again, so it will be a while before we move. I will be calling doctors tomorrow (I need a new PCP) so I can get tested. As much as I'm worried about the gluten free diet and being able to stick to it without CC in a house with two non-celiacs, I hope I have it b/c I'm REALLY tired of feeling terrible all the time.

I'm really worried about how my husband will react and deal with it, though. Today I was reading something about Celiac Disease online, and he read over my shoulder. He started scoffing and laughing when I told him that I think I really have it. He asked what happened if I do, and I said that I have to stop eating all gluten. He walked away and said "Well, good luck with that." *sigh* He is really supportive of my other health issues, so I'm hoping once I get a diagnosis and the diet starts to make me feel better, he will change his tune.

GFinDC Veteran
GFinDC
Posted

HI,

Your hubbie's friend may not have heard of "silent celiac". Silent celiac is when a person has celiac disease but has no symptoms. There are quite a few people with silent celiac walking around and they don't know they have it. There are also a lot of people with IBS walking around who may actually have celiac or may have NCGI (non-celiac gluten sensitivity). There are no tests for NCGI right now, but some recent research shows it is real.

sometimes people are diagnosed with celiac when they go to their doctor for some other condition, like rhuematoid arthritis or fibromyalgia. The primary symptoms are often not in the gut, but somewhere else in the body. So just because a person doesn't have GI symptoms doesn't mean they are not celiac. Most likely symptoms will develop in some part of their body after some time has passed though. We all don't start right out with the maximum amount of damage from day one of celiac. It is a process that keeps building up. Ongoing damage can take a big toll on your health.

Celiac is not the same for all people, just like all people are not the same. Some people gain weight with celiac, others lose weight. It is a very confusing disease symptom wise. Some people get depressed or have other mental symptoms, but they don't know why.

You could look at LabCorp testing for the celiac panel. I think they advertise on this site sometimes. The results don't have to go to your doctor that way.

Here are some threads that may be helpful:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

GottaSki Mentor
GottaSki
Posted

Well, we found out today that my husband's job offer fell through. We want to get some things wrapped up here, like selling our house, before he sends his resume out again, so it will be a while before we move. I will be calling doctors tomorrow (I need a new PCP) so I can get tested. As much as I'm worried about the gluten free diet and being able to stick to it without CC in a house with two non-celiacs, I hope I have it b/c I'm REALLY tired of feeling terrible all the time.

When I first went gluten-free, I had three gluten eaters (teens later went gluten-free). It worked fine. I got small round green dot stickers and we put them on everything that was gluten-free -- eventually almost everything in the fridge/pantry had green stickers, so we then decided that the gluten eaters would only have gluten bread and cereal in the house. After my kids went gluten-free - my husband only eats gluten outside the home.

You can make many standard every day meals that are gluten free - change your wheat flour to a good gluten-free flour mix for baked goods - the most helpful thing I discovered was when I stopped looking for specifically gluten-free recipes as they often call for many different flours and more expensive ingredients - instead I went back to using standard cookbooks/searching for standard recipes online and replaced only the gluten items in the recipe - was a lot easier for our family to cook gluten-free from then on. For some things I search both regular and gluten-free recipes to get ideas...like when I wanted to make cheesecake - never would have found the great way to make gluten-free graham cracker type crust without a gluten-free recipe.

It sounds daunting to you right now and you will have frustrating moments, but it does get easy and become second nature.

Make sure you read the links GFinDC listed and you will be ahead of the game at "GO".

Hang in there :)

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