New Member - 40 Years Undiagnosed

[Sheri F]

Hi, I'm Sheri and I'm a new member. I'm 47 and live in Southern California, USA.

I'm so happy to find this website and forum! Most Internet searches kept leading me here. What a great resource.

I still need to schedule formal testing, but I believe I have Celiac Disease or severe gluten intolerance. I think it was triggered by severe pneumonia when I was 5 years old.

Since then I have had lifelong respirarory infections, and then at age 27 developed about 45 allergies and thyroid disease. I started getting ear, eye, sinus infections and strep throat also. I developed laryngeal edema to many allergies, sleep spnea and severe dental erosion.

After several years of unrelieved acid reflux, I was diagnosed with colon cancer and had 2 tumors removed - the first of many. Luckily most were benign. I was also pre-diabetic.

I started the Atkins diet in Spring 2014 and lost 34 lbs. Even better, the chronic acid reflux I'd had for 20 years went away! At first, I thought it was because of the weight loss. But when I started eating wheat again, I would get acid reflux. I visited my endocrinologist and was advised that I was no longer pre-diabetic after 4 months on this diet, which was great news after 15 years of that condition.

After a few more months of continuing to be gluten free, my reactions were MUCH worse. If I had occasional accidental gluten exposures I would get very ill and stay ill for 4 days. Even minor cross-contamination would give me some acid reflux, and happened almost every time I ate away from home. This led me to believe I might have Celiac Disease. This would explain many years of allergies, respiratory/sinus infections, acid reflux, possibly my thyroid disease, and my diagnosis of colon cancer at age 34. At that time, the doctor had told me I was also at high risk of developing esophageal cancer, but they couldn't determine what was causing the large, recurring colon polyps and severe irritation/inflammation to my whole digestive tract. It affected my respiratory tract as well. 13 years later, they still hadn't determined the cause of the inflammation. Then my arms and legs started to go numb!

It now looks like maybe Gluten was the culprit all along. I'll do some formal medical testing to confirm it. I'm hoping it will mean less frequent colonoscopies in my future. Currently I have them every 6 months to 2 years maximum since age 34. I also have 13 dental crowns due to dental acid erosion and numerous cavity fillings. Since I cut out gluten, I haven't had a new filling or crown. In November 2013, I had 3 new crowns that month alone.

Regardless of my diagnosis, I plan to stay gluten free. It's already made a huge difference to my quality of life just in eliminating the acid reflux.

[kareng]

Just remember, you need to be eating gluten to make the antibodies that are tested for.

 

 

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"Antibody tests are only accurate when

a patient is on a gluten-containing diet.

Those concerned about celiac disease

are strongly discouraged from starting a

gluten-free diet without having had a firm

diagnosis. Any change in the diet, even for

as little as a month or two, can complicate

the diagnostic process."

 

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"Any changes in your diet can affect the

accuracy of your biopsy results. It is

necessary for you to be eating gluten

every day for at least 12 weeks before the

procedure. If you are scheduled for a biopsy

and are not eating gluten, talk to your

doctor about what is necessary to obtain

accurate results. If you have a biopsy and

have eaten gluten only a short time before

the test, you and your physician will not

know if a negative test result is accurate or

due to your diet. "

 

 

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A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

[Sheri F]

Hi Karen - thanks so much for your reply!

Yes, unfortunately I know that I will need to eat gluten again before the blood test and endoscopy part of the diagnosis.

I plan to start with the DNA testing first. If the DNA test is negative, no point in putting myself at risk to do a gluten challenge for further testing. I accidentally got glutenend at Christmas dinner (turkey brine had soy sauce) and almost went to the emergency room.

I plan to avoid gluten anyway, regardless of diagnosis. The good news is that liquid vitamins have already made a difference pretty quickly to my general wellbeing, so I'm encouraged that I may be on the right track.

[BlessedMommy]

Hi and welcome to the forum!

 

If you almost ended up in the ER, due to accidental gluten exposure, I would think that a gluten challenge would probably not be worth it.

 

Fortunately, you don't need a doctor's permission to stay gluten free. I've been gluten free for almost 5 years now (I ended up in the ER 10 days into my gluten challenge) and it's completely possible to follow a celiac lifestyle without any doctor's notes. I have neurological complications (had a TIA/mini stroke) from gluten and I knew that no matter what the tests said, it wasn't going to change anything, I wouldn't eat gluten anyway. The biggest risk for me in eating gluten for 12 weeks is having a stroke (and therefore getting permanently disabled and dying). I had a relapse of neurological symptoms after I let the kids eat bread in my house for a few weeks for their gluten challenge.

 

There's no way at this point, that I would purposely eat gluten for any reason at any time. If someone offered me a million dollars to do a gluten challenge, I wouldn't do it.

 

The main thing to watch for, if you decide to practice a gluten free lifestyle without a celiac diagnosis, is cross contamination. I see so many people (who haven't even properly ruled celiac out) say, "Oh I'm not celiac, so I don't have to really be careful about cross contamination." If a person has decided to forgo celiac testing, it's better to just live as a celiac and be 100% gluten free.

[1desperateladysaved]

Welcome Shari F,

 

  Some of the damage is reversible and I hope you will continue to enjoy improvement.  The gluten challenge is several weeks; I knew that I had to avoid gluten, and felt it was unethical (for me) to go back on gluten.  Whatever you do, I hope it will bring healing.

 

I wish you well.

[Sheri F]

Thank you for making me feel so welcome and validated also!

BlessedMommy, that exactly what I'm afraid of - they I might not survive a gluten challenge! Cross contamination is exactly the issue I'm dealing with right now. It's a learning curve I guess. Now I just tell them I'm Celiac at restaurants - once at Pieology (pizza place) I told her she didn't need to change her gloves - and REALLY regretted it. Ugh.

I'm so grateful to my wonderfully supportive family and friends and so happy to discover wonderful resources like this website and community!

[BlessedMommy]

Yeah, I generally tell restaurant staff I follow a celiac diet, am gluten free because of serious medical issues, have severe gluten intolerance or something like that.

 

I don't go out to eat very much. I either pick places that have procedures in place to accommodate celiacs, or I pick foods that are unlikely to be cross contaminated. (like a smoothie at McDonald's or a baked potato (with the foil still on it) at Wendy's) Yesterday, I went out to eat at a vegetarian restaurant with a large gluten free menu. They had gotten training from the GIG's restaurant program.

 

When I go to people's houses or potlucks, I carry my own food, kept warm in a thermos. If I eat any single ingredient foods (like raw veggies), I put them on my plate before other people have touched them.

[icelandgirl]

Hi Sheri and a big welcome ((hug)) to you! Like so many on this board it sounds like you've been diagnosed with just about everything other than celiac disease for years! It sounds like a gluten challenge would be a scary thing for you...I know that nothing could make me eat gluten now. I hope that you continue to feel better gluten free...it will take time to heal from so many years of damage. It's good to have you here!

[Sheri F]

Thanks for the welcome everyone! I'm so glad I found this forum. BlessedMommy, that's great advice!! I have a Bunco potluck on Monday actually, so I'll just bring my own meal.

[BlessedMommy]

Yep, as a general rule, almost anything put out on a communal eating table is unsafe. LOL! I've gotten Pyrex portable glass dishes with snap on lids and my thermos and that pretty much covers most food transporting needs. If I bring a dish to a potluck to share, I scoop out my portion first and then put it on the table.

[1desperateladysaved]

How is it going Sheri?

[Sheri F]

Hi - thanks for checking in on me!

This week is going much better for me! I'm trying to be brave and eat out more socially.

Last night I went to a party and brought raw veggies. I ate beforehand, but the party started at 2 pm and ran until 11 pm, so I brought some bars just in case. I had alcohol, cheese, fruit, veggies and a bacon appetizer (I checked on the ingredients). Later I had just plain lettuce for dinner because the meat had marinades and the salad dressings I was nip it sure about. A couple people asked if I was vegetarian, haha. I kept it low key and said I'd had some stomach issues lately, maybe celiac disease so I'm just sticking with bland food for now and they didn't make an issue of it. Really it would have been fine to bring my own food. I'll do that next time..

Tomorrow I have a Bunco party and am bringing veggies again plus corn chips and dip. But I'll also bring a chicken breast and my own salad dressing. I'm starting to get the hang of this!

Last week my friends treated me to lunch and I got slightly glutened. My fault - they chose the restaurant & it was Indian which is usually ok. I didn't ask the waiter questions because he didn't speak much English. So I have ordered some Triumph cards for next time!! I think it was the tikka masala. I checked online and sometimes a Tandoor oven can be the issue as the "flour" it. Or the type of curry they use. Otherwise, I had palaak paneer (spinach), lettuce with raita (yogurt) and water and plain rice which usually would be ok. I'll have plain chicken tikka next time - or maybe just go somewhere else!

For a while it seemed like the whole world was a poisonous, dangerous place, but I've calmed down a little bit now and am willing to venture out again! :-)

[Sheri F]

Update - Bunco was a big success!!

I brought my own veggies and gluten free corn chips & guacamole for appetizers to share.

For dinner, I brought a precooked chicken thigh wrapped in plastic wrap in a Baggie and asked the hostess if I could keep it in the fridge until dinner. I brought a little container of salad dressing too.

It was a potluck served buffet style. When it was time to eat, I grabbed a plate, was 3rd in line and put salad on my plate before they could add dressing & toss it. Then I scooted over to the fridge and stealthily added my own cold chicken & salad dressing. No one even paid attention! My entree looked similar to another that was served.

It was surprisingly EASY! I thanked my hostess later for being flexible & she really didn't mind at all. She told me I should try Nut Thins - she loves them! LOL. She said a few of her other friends are going gluten free too.

I felt REALLY empowered and it went so smoothly - and I feel GREAT!! No gluten after effects!! I really feel like I can DO this!

[BlessedMommy]

You can do it! Good job!

[Springbok]

I must have had celiac in childhood because I had so many bouts of stomach upsets and no one knew what was wrong. Certain foods brought on days of pain. As I got older it was the same and I did'nt think it could be celiac until my young grand daughter was diagnosed with it and I decided to get tested. Since then I've adopted a gluten free way of eating and feel much better. Now I'm wondering how many more in my family should be tested.