Cancer Survivor- Now Facing Possible Dx Of Celiac....

[BeccaM]

Hi everyone!

My name is Rebecca and I have been reading the posts here for a few days..

I am 29 years old and a stage 3c uterine cancer survivor. I am ten years out! Yay!

The amazing thing is, about five years ago, I had a surgery to remove my gallbladder and since that time, I have had the WORST GI issues.. I have had constant diarrhea, gas, bloating, innability to gain weight (I just made the 110 mark and I'm SOOO happy!) etc.. I was dx with B12 anemia, peripheral neuropathy, and severe osteoporosis. ALL of these things the docs believed came as a result of my chemotherapy and radiation, but they were baffled by the fact that the symptoms came on so late.

I also have complained of a lump in my throat feeling for the past two years, had iron def. anemia, and constant flu-like symptoms. This summer i was hospitalized twice for bowel obstructions (which they believe were due to adhesions).

WOW- so sorry to rattle on there... I don't mean to sound like a complainer- just wanted you to have a background.

So I decided to try a gluten free diet for the past two weeks and OH MY GOSH!! I feel so much better! Now, that is not to say that I don't have some bloating occasionally- but no more diarrhea, and my bones feel less achey.. It's amazing.

So yesterday I had my first appt. with a new GI doc, and he immediately started asking me questions about celiac after looking at my elevated liver enzymes and pancreatic enzymes and hearing all of my complaints.

Another big thing for him was my red hair and blue eyes i guess. What is that about? I told him that my family is Eastern European and he said that he would not even need to do a biopsy if the bloodwork came back positive.

So needless to say, I'm a bit overwhelmed, but also kind of glad that there is something that I can do to fix myself.

I am just not sure after being gluten free for two weeks if my bloodwork will come out positive. Do you think so?

I am really looking forward to talking with everyone here.

Thanks for giving me a place to share and connect

-Rebecca

[momandgirls]

Hi Rebecca - I don't have Celiac but my daughter's in the process of getting tested/diagnosed and so I've been reading this board and asking questions and, I have to say, everyone is so incredibly nice and helpful. But, in reading your post, I just thought I'd respond to your comment that you have a lump in your throat. I had that feeling for several months and could never get it to go away - it felt like I was wearing a turtleneck but I wasn't so I was always pulling at the front of my shirt kind of feeling. Anyway, I had bloodwork done for thyroid and also for H. Pylori ulcers. My doc thought either it would end up being a burn from reflux (though I never had reflux so that didn't really make sense to me) or thyroid disease. Anyway, both came back positive! I took antibiotics for two weeks for the ulcer and that was the end of that and my thyroid antibodies were extremely elevated and I went to an endocrinologist. I have Hashimoto's thyroiditis - it will go away on its own and there's really nothing to do about it except avoid foods that are high in iodine (soy, seafood, etc.) because your thyroid absorbs iodine (this was the biggest problem for me given that I don't like meat and soy was a huge part of my diet, but, oh well...) Eventually, I guess, I'll end up with thyroid disease but it hasn't happened yet. So, I can't answer any of your questions about Celiac but just thought I'd let you know my experience...

[jenvan]

So glad you're going on 10 years! You were so young--that must have been hard. We're glad you here with us now! You sound like classic Celiac--you have many of the typical signs and symptoms. Good news to hear you are better on the diet too. The book Dangerous Grains, if you are looking for an interesting read, discusses gluten in depth and also talks about the findings and possibilities of gluten and its causitve relationship with cancer. Welcome to the board and keep us updated!

[jerseyangel]

Hi Becca, and welcome! That's great about you're being a 10 year cancer survivor . Just my 2 cents here--although I had stomach problems for years, it was after surgery that my Celiac symptoms really kicked in. Shortly after the surgery, instead of feeling better, like I had expected to, I began to get severe D, tingling and numbness in my face, arms and legs. My depression and anxiety went through the roof. My anemia worsened, I was dizzy most of the time. I also had a feeling in my throat--like there was something stuck down in the base of it, and when I would eat, I felt like I could choke. I also was clearing my throat a lot. Very strange feeling. It got so I didn't like to eat alone in case I did choke. (I never did, just was afraid I would) I was finally dx. in June and have been gluten-free ever since--the throat thing is gone--most of my other symptoms are greatly reduced--although I still get tired easily. The point is, that all of the problems you talked about can be due to Celiac.--even though at first they may not seem connected. As far as the blood tests, I never had them, just the biopsy. I know that someone who has had experience and knows more about them will weigh in soon. Lots of nice, helpful people here--glad you found us!

[BeccaM]

Thanks so much everyone!

You are all a wealth of knowledge.

SO, I have been trying to stick with the gluten free diet very consistently. The only thing that I am really confused about is the oat conundrum.

What is the consensus on that around here?

If I buy from Bob's Red Mill is that better than if I bought Quaker?

Or should i avoid them altogether.

I have been eating them, occasionally-

Just want to know if I am doing things the right way!

Thanks

Becca

[Jen H]

Hi Becca,

Glad to hear you're feeling better. This forum has helped me so much and I hope it helps you too. Feel free to ask any questions.

I am pretty new to celiac myself (I was diagnosed 6 months ago), so I definitely don't know as much as some of the other people on the forum. Personally, I steer clear of oats. I went to a support group meeting and some of the experienced members suggested for me to avoid eating oats for the time being. It sounds like some people do eat oats while others don't.

[jenvan]

Becca-

IMO, Please stay away from the oats. For two reasons...1st, oats are typically contaminated here, from processing, milling, many factors. One study found that 3 different brands had gluten contamination most of the time. 2nd, some individuals react to the avenin protein in oats. How does one tell if they are that type of person? It's a tricky answer...follow-up testing, endoscopies etc.? But at this point, there isn't a clear way to know. Tiffany recently posted that she thought it was 10% of Celiacs react to oats independently of gluten...she couldn't remember for positive though. Anywho, even if you are not one that reacts to oats, the question still remains over how you can get safe oats. I wouldn't take any chances.... Have you been using them in cooking or eating oatmeal? We can help you think of some alternatives you might not have explored yet...

[BeccaM]

Thanks so much for the Oat feedback.

I am now so sad that I have been making big batches of granola with them and eating steel cut oats. Both are from Bob's red mill, so I assumed that they would not be contaminated.

But, alas- it looks like I am going to need to find a different breakfast option.

I was such a cereal eater all my life, and I miss my bran flakes, granola and grapenuts. What can I eat for breakfast?

I had a horrible experience with the life is good (is that the brand name) Berry Granola. Horrible- tasted like plastic... THen I tried Bob's Red mill gluten free bread- YUCK!!! I have been a bread baker my whole life, and this tasted like metal to me. I could not even take a bite. I had to spit it out. i tried to put peanut butter on it, but it was so bad...

I do like rice cakes, and eggs, and I did buy some gluten free hot cereal. But what else do you all eat in the morning?

I like to have a pretty big breakfast in the morning. So fruit won't cut it.

Thanks so much

Becca

[jenvan]

I'm sorry girl There could be a chance the oats are okay and not harming you, but we can't take the chance I think. Maybe one day the facts will come out and we can... Until then--my favorite cereals (I love cereal too : ) Hot oatmeal/replacement--cream of rice. It is very similar to cream of wheat. I get Erewhon brand. I cook it on the stove, add brown sugar and rice milk--its is really yummy I think. Lundberg also makes a cream of rice.

You can still make granola--use puffed rice, various nuts, coconut, flax... I have a recipe I love.

Other cereals I love--Nutty Rice (my favorite!), the Erewhon crispy rice and Crispy Rice with berries is great, seriously They also make a rice twice cereal that's good. Ck them out here: Open Original Shared Link There is also a gluten-free rice chex/corn chex cereal--Rice Crunchems and Corn Crunchems. The maker is Health Valley.

Have you tried Kinnikinnick bread yet? That is probably the favorite around here. I really like the bread--especially toasted. You could eat some with peanut butter too in the morning.

Ck out the two posts below which are on people's favorite gluten-free cereals.

Open Original Shared Link

Open Original Shared Link

[arc]

I don't do grains at all, so this is what I do for cereal, when I get the urge. I take a handful of unsweetened coconut flakes (cheap at the health food stores), add some sliced almonds, some chopped pecans, craisins or dried blueberries, some Splenda and cinnamon, to taste. The coconut adds the bulk and the nuts make the crunch. Also, the coconut isn't very strongly flavored - my wife doesn't like coconut but she likes this mix.

[penguin]

Honey Rice Puffins from Barbara's Bakery are awesome! They almost have a cherry flavor to them and the texture is a lot like captain crunch.

Some people react to them, though I haven't had a problem.

You have an excuse now to treat yourself to a nice cheesy omlette and hash browns

[paulasimone]

Hi mom (of momandgirls),

This is my first time visiting the board here, and I was so struck by your post that I registered myself to comment. I'm celiac myself (diagnosed 3 years ago). The problems you list (the turtleneck thing and the hypothyroid) were problems i went to doctors for, too. The thyroid thing in particular was hard to get help for - none of the doctors could understand how I could be thin and hypothyroid (they'd take one look at me and be like, no way.)

A wonderful doctor finally convinced me I was allergic to wheat (i was extremely resistant to the idea - there's no way, I said, that *I* have a food allergy like that). Eventually, I found it wasn't just wheat but gluten. Before I would accept the allergy diagnosis, we tried to address the problems one by one. I took Armour thyroid pills, etc. But just like he told me it would, the thyroid problem is gone now that I am on gluten-free diet. Hypothyroidism is a frequent complication from gluten allergies, according to my wonderful doctor (in the Duke University medical system in North Carolina).

As for the throat thing, that problem was so weird and annoying. It's gone now that I'm gluten-free. However, and this turns out to be useful, now that I'm gluten-free I've become so aware of my body's reaction to gluten that whenever I eat something with some unexpected gluten in it, I can tell because I get a kind of puffy strange feeling in my mouth/throat that reminds me of that turtleneck thing years ago (which I had *completely* forgotten about until I read it in your post! thanks for the memories!

I guess what I want to say to you is - you *really* should consider that you yourself might have this, too. It *does* run in families. You'll probably notice on this board that it's not just kids that have it, and lots of folks are diagnosed as adults (including me). The great thing is that you are already educating yourself to help your daughter. (Incidentally, my mom had the hypothyroid thing too and is now being tested for celiac, too.)

good luck with everything!!! please do get tested yourself!

paula

[cassie]

Paula, your message really gives me hope!

I am awaiting biopsy results from the endoscopy, which did show damage in the photos (along with ttg of 97), so I think the celiac diagnosis is pretty firm. I've been gluten-free less than two weeks now, but vigilant.

The hypothyroid issue is of great interest to me. My T3 is low with normal values for TSH and T4. My practitioner put me on low dose Armour about a week ago. Without a long-term lab history of T3 numbers, it's impossible to make a correlation between the worsening of celiac disease and hypothyroidism, but the fact that your stellar physician sees the thyroid issue as resolving with gluten-free is wonderful to know. (I am thin, too, so I can relate to the "you can't be hypo" assessment).

I have visited this forum a few times and I think it is an excellent group with specific advice and great honesty, not to mention kindness and generosity of spirit. Thanks and I look forward to being part of the community.

Cassie

[Claire]

A gluten free diet is the healthiest you will find - even healthier if you avoid the very expensive junk gluten free foods that tempt those who can't quite part with the chocolate covered donuts and cakes etc.

Go gluten-free. You won't reget it. What is the worst thing that can happen. You will feel better.

If you intend to be tested for celiac get tested before you go gluten-free. Claire