Gf 6 Months But Still Bad Biopsy!

[jmarie]

I was diagnosed with celiac disease after a biopsy last April (doctor during endoscopy: "Whoa - That's celiac disease!") & I have been trying my hardest to be gluten-free ever since. I have been arthritic and anemic with periodic systemic inflammations since I was 17 (now 29), but last winter was SEVERE gastrointestinal pain, to the point of complete incapacitation. Anyway, I have been periodically very sleepy and my stomach maintains its stubborn ugly bloat no matter how many miles I run every day.

My diagnosis after last week's endoscopy is "Celiac Disease Unresolved with Gluten-Free Diet". What does that mean??? What if all the "risk factors" - including cancers and autoimmune disorders - are now mine no matter how gluten-free I am? I have a follow-up appt. in two weeks, but I don't really trust my doctor, who keeps insisting that bloating, weight gain and constipation are not associated with Celiac's and "it must be from something else".

Sigh. Does anyone have any guidance to offer? I'm freaking out a bit (clearly).

jmarie

[KaitiUSA]

Refractory celiac disease is very rare and that is when you are non responsive to the diet.

I don't think 6 months is enough time to really conclude that though...some people with extensive damage can take a few years to heal.

Have you been 100% gluten free with no cheating at all? Have you changed products like makeups, shampoos, soaps, lotions and stuff like that? That stuff has a high chance of getting ingested in some way, shape, or form.

[VydorScope]

And becarfull because some ppl assume gluten-free means wheat free and thats NOT TRUE. Heres an example list of things you need to aviod on gluten-free:

https://www.celiac.com/st_prod.html?p_prodi...-03105361019.73

[nettiebeads]

Sigh.  Does anyone have any guidance to offer?  I'm freaking out a bit (clearly).

jmarie

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I disagree with your dr re: symptoms. Some people with celiac disease do have bloating, weight gain and constipation. I definitely have the c. Sucks almost as bad as the d. Have you tried scaling your diet way back to fresh meats and just veggies (canned or frozen or fresh) just to see if there is improvement? I agree with Kati in that gluten thingys are everywhere it seems. I've had to pitch a few hair products and watch body lotions. A few of them have aleva sativa (oat).

Is there cross-contamination in the house maybe? Also, after being sick for 12 years, it may take some more time. Keep at it and don't get discouraged.

[jmarie]

Hi again. Thanks for the responses.

While my diet and (I believe) my skin products are gluten-free, my household is not. My husband and daughters (7 & 9) all eat quite a bit of gluten and I do all the cooking. I wash my hands frequently, but my husband suggested that maybe it's getting in through my skin (is that possible?!). The husband has agreed to a gluten-free household, but that makes life much, much more difficult for me since my daughters are already picky eaters. That might sound lazy, but I work ft, go to school & ft+ child-raising.

I think I've had a really good attitude about all this until now, but I am feeling really sad and frustrated at this point. My mother died of lupus and had sjogren's syndrome (both associated w/celiac's although she was undiagnosed) and my brother is hydrocephalic, a congenital disorder that can occur if the mother is an untreated celiac.

Sorry for the whining, but I really have nowhere else to whine. I don't know anyone with celiac's disease & had never heard of it until my diagnosis.

[bluelotus]

I would agree with KaitiUSA. Double check hand soaps, lotions, and if you want, hair products (though I realize some feel this is taking it too far and you should only worry about food).

I thought I was gluten-free for a year (with some confirmed mistakes - like a bad soy sauce, bad yogurt, bad chips), but I have been sick for the past 4 months on and off. I thought it was a corn intolerance, and though I felt better the first week off corn, symptoms returned. Then I blamed my husband for contamination. But, I found out yesterday that a hair product that appeared safe had gluten in it. I touch my hair a lot, work out - with sweat on my head running down my face and possibly into my mouth, residues of the product could have gotten in my mouth while showering.....who knows. So, long story, but I would contact your product manufactorers .....even though things appear safe, you can never be sure by reading the ingrediants.

[Guest nini]

something else with hidden glutens that got me was prescription medications. I was taking some that had gluten in them as a filler and I didn't even know. It took a very vigilant pharmacist to help me figure out which prescriptions were ok and which ones weren't for my Dr. to change prescriptions.

After a while though I was able to go off of almost all of my prescriptions.

I think if your Dr. was able to visibly see Celiac during the endoscopy, then your damage was very severe and just may take you a little longer to heal. Are your symptoms improving at all? That would be one of the first things to look at. If your symptoms are showing some improvement then there is a good chance that it's just going to take your body a while longer to heal.

Please don't be discouraged. I didn't have the biopsy at all and don't feel the need for any follow up biopsy. My bloodwork was highly positive and my health has improved substantially in the last 2 1/2 years, although I am still not 100% better... I have faith that I will be as long as I stick to a strict gluten-free diet.

good luck.

[Ursa Major]

Marie, if you're doing all the cooking that could definitely be the problem. Do you bake? I read that flour particles will be in the air for 24 hours after baking/cooking with flour. Of course, you'll inhale some, and you'll be glutened!

My family isn't allowed to bake anything not gluten-free in my house anymore. And I won't cook anything with gluten, either. They want it, they have to make it themselves. (Of course, my kids aren't little, the two youngest of five are still at home, and they're 20 and 13).

Another way of glutening yourself is licking envelopes or postage stamps (I'd NEVER have thought of that if I wouldn't have read it here). I only use self sticking stamps and envelopes now (and use a sponge to moisten the reply envelopes companies send to use).

You may also be intolerant to other foods (a lot of celiacs are especially intolerant to all dairy products). You may want to keep a food diary to figure out what reactions you have to certain foods (if any).

[jmarie]

Hi there,

My symptoms have improved quite a bit - that is, I was spending hours each day vomiting or curled up on the floor trying to will myself to a standing position, and I am definitely not in that position now. However, I still have stomach distention, exhaustion, foggy-headedness and digestive distress. My joints occasionally swell up.

Does anyone know how long it takes for one glutening to die down? That is, if I have been absolutely gluten-free but accidentally one time ate a little gluten, would it be another year before I felt well again?

something else with hidden glutens that got me was prescription medications. I was taking some that had gluten in them as a filler and I didn't even know. It took a very vigilant pharmacist to help me figure out which prescriptions were ok and which ones weren't for my Dr. to change prescriptions.

After a while though I was able to go off of almost all of my prescriptions.

I think if your Dr. was able to visibly see Celiac during the endoscopy, then your damage was very severe and just may take you a little longer to heal. Are your symptoms improving at all? That would be one of the first things to look at. If your symptoms are showing some improvement then there is a good chance that it's just going to take your body a while longer to heal.

Please don't be discouraged. I didn't have the biopsy at all and don't feel the need for any follow up biopsy. My bloodwork was highly positive and my health has improved substantially in the last 2 1/2 years, although I am still not 100% better... I have faith that I will be as long as I stick to a strict  gluten-free diet.

good luck.

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[VydorScope]

Does anyone know how long it takes for one glutening to die down? That is, if I have been absolutely gluten-free but accidentally one time ate a little gluten, would it be another year before I felt well again?

From what I can tell, by askign simular question of others wth celiac disease ppl the "norm" seems to be that symptons set in 2-4 hours after getting gulten, and last around 2 weeks with the worst impact in the first 3-5 days.

My son falls with in that patern perfectly at least.

[Guest nini]

I would say that your symptoms have improved enough for you to know that the diet is working for you. I agree that keeping a food diary might be useful to see if there are other foods that are also aggravating your symptoms

here are some of the more common ones, corn, soy, dairy, eggs, and nightshades

[FaithInScienceToo]

OOPS - just added this to another thread you had posted on -

am just copying and pasting here - Gina

I am sorry to hear that your gut is not healed yet...and that your doc delivered the news in a poor manner -

Have you begun to look into ALL possible sources of gluten contamination?

Did you doc mention that it can take longer than 6 months to heal?

Also...I have seen threads on here that discuss other possible causes of villi damage...did your doc talk to you about them?

Gina

PS - I, too, had a colonoscopy, and got sick from the prep, then had to be up all night drinking more prep...glad it's over...for 10 years, at least! :-)

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