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Noob Here-Introducing Myself

Aphreal

By Aphreal
in Coping with Celiac Disease

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Aphreal Contributor
Aphreal
Posted

Evenin :) Figured I should introduce myself. I'm Tiff, married 18 years and have four kids. We live in Texas. Readers digest version of my experience.... I started having bloating and pain, D and constipation when I was 10. Dr's tell mom it's all in my head. 8 years later I was *diagnosed* with IBS and Hyperplasia of the terminal illium. Ok here I am 40 and I have suffered for 30 years. In addition to all the pain, bloating and poo issues (sorry) I started developing migraines, chronic fatigue, extreme exhaustion, depression, moodiness... I also have arthritis and memory loss. So... I'm real curious why every dr I go to.. I tell them I have IBS and list all my symtoms, none of them ever even suggestion gluten. They said my blood was ok and I was just depressed.

Well it got really really bad and I thought for sure it was my sugar, (I have hypothyroidic episodes) so in searching ways to help THAT, the gluten issue just.. clicked. Why had I not thought of it before!? Well I ditched gluten cold turkey 2 weeks ago. I am seeing such an improvement. I am sleeping more normally (although I have the weirdest dreams) The pain is almost gone, Less bloating, my bowels have normalized for the most part (what ever normal is lol) The headaches are almost gone, the bags under my eyes are gone and I just feel much better over all. I am still learning where gluten hides but I am learning (sometimes the hard way)

So that is my story. If I felt so crummy for so long and feel better so quickly after going gluten-free.... how can it NOT be that? My next step is go to the Gastro and test for the extent of the allergy and see what kind of shape my intestines are.

Thank you for havin me!

Tiff

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conniebky Collaborator
conniebky
Posted

Hi Tiff!

Nice to meet ya! One word of advice - don't start feeling better and get lost in the "I feel fine, it wasn't gluten" thing, cuz that's what I did, so save yourself the heartache!

i-geek Rookie
i-geek
Posted

Something to consider: to even have a hope of a positive test result, you need to still be on gluten. Even if you do get a negative (false negatives are extremely common with celiac blood tests), if gluten-free is giving you this much relief, stick with it. You are the expert on your body.

I've had mild GI issues with occasional severe flare-ups for years along with infertility, but I assumed that everyone had gut problems (otherwise, why would there be so many OTC meds?). Multiple doctors ran a few tests, found nothing, and dismissed my problems as IBS. My health suddenly went downhill last fall to the point that I wasn't having normal BM ever, daily headaches, constant crushing fatigue, mood swings that felt uncontrollable, bloating, mouth sores, terrible sinus issues, and the progressive loss of the ability to digest foods I'd always eaten. I too had the bags under my eyes- one of my coworkers asked me why I was so tired every single time I saw him. I went off gluten for a week in late November and had the headaches and fatigue clear up almost immediately. Stayed gluten-lite through December, went to the doctor, she ran one of the blood tests (only TTG IgA- she should have run a panel of several tests, from what I understand) and it came up negative. Went back on gluten for Christmas to test things (since I assumed I was nuts) and was nearly comatose after four days of family food events. It took about a week just to be able to stay awake for an entire day and function semi-normally. I decided that I didn't need a diagnosis and went off gluten completely. Seven months later my gut damage has healed so that I can digest dairy, brassica vegetables, peppers, and pork again. I can drink alcohol again without my gut feeling like it is on fire. My hypoglycemia has stabilized. The tapioca starch that set off bloating early in my gluten-free life doesn't bother me anymore. Now I only get bad headaches if I accidentally ingest gluten. Ditto for the weird digestive issues and the depressed fatigue. And it doesn't take much to set me off. Stray crouton crumbs on a salad or bread crumbs on a grill will give me acute symptoms for 3-4 days and make me feel "off" for about a week. I expected that since I had a negative test, crumbs were no biggie. Not so.

Tina B Apprentice
Tina B
Posted

Ok here I am 40 and I have suffered for 30 years.

mushroom Proficient
mushroom
Posted

So... I'm real curious why every dr I go to.. I tell them I have IBS and list all my symtoms, none of them ever even suggestion gluten. They said my blood was ok and I was just depressed.

Welcome onboard, Tiff. I am sorry, but I had to laugh when I read the above. NEVER tell a doctor you have IBS or they will believe you :rolleyes: , and leave it at that. Most of us have spent our lives trying to tell our doctors we DO NOT have IBS :lol: , that it is something else, and we want to know why our bowels are so darned irritable if that's what they insist on calling it.

butterfl8 Rookie
butterfl8
Posted

Ah, welcome Tiff! Tell them you read on here that depression is concurrent with celiac and may go away after starting a gluten free diet.

Not much info, but I think the reinforcement of ideas will encourage my belief that celiac may promote depressive behaviors, and that eating gluten (for an undiagnosed celiac) will encourage (mentally) depressive behaviors. MY THOUGHTS ONLY--NOT BACKED BY ANY STUDIES!!!! But something for Dr's who like to focus on depression (I had one) to think on. Have I confused you yet? I'm Sorry. I may have confused myself.

At any rate. . . .Enjoy being here, we love to help--and I'm not usually so long winded. . . preparing for grad school. ;) Stay gluten free if you feel better, and if you aren't concerned about an 'official diagnosis.' At any rate, clean your house. Make sure your beauty products are safe. Better to be safe than sorry, my mom always said!

-Daisy

Skylark Collaborator
Skylark
Posted

Welcome Tiff. Your story sounds SO much like mine. They told me my childhood stomachaches were psychosomatic. :angry: I had IBS, depression (which went to bipolar), moodiness, horrible fatigue, and a bunch of other stuff. Sure enough, it was gluten.

As I-geek says, you do need to be eating gluten to have a shot at a positive test. The antibodies that make you sick go away when you go on the gluten-free diet.

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Aphreal Contributor
Aphreal
Posted
  • Author

Well I know that NOW :). All these years I just told them IBS and they didn't think twice. I deserve better than that.

Thank you guys for your warm welcome! The more I heal, the better I can tell when I get glutened. I mean it sucks yea but... there is no mistaken it!

Onward glutenfree soldier.

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      By trents · Posted

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