Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiacs Should Get A Pass

sandsurfgirl

By sandsurfgirl
in Coping with Celiac Disease

Recommended Posts

sandsurfgirl Collaborator
sandsurfgirl
Posted

When I got diagnosed celiac nearly two years ago I thought that was it, the answer to all my health problems. My health improved so much on the gluten free diet but I still couldn't lose weight and still had fatigue and a few other things. Now I find out I have an adrenal tumor (not cancerous) but it's secreting cortisol which means I have Cushings. I'm looking at surgery for it in the future. And I'm sick again.... especially in the morning. I spent 10 days in the hospital a couple of weeks ago.

I hate celiac and what it has done to my body. I was diagnosed at 40 and I have to wonder if celiac caused the tumor. And I'm angry because I feel like celiacs deserve a pass on all this other crap! It's not fair that doctors missed it for so long on so many of us and we have all these other things.

Since I'm sick again I'm not eating out at all for fear of CC and it is such a pain to have to cook everything and take food everywhere I go. I don't eat at that many restaurants anyways, but still I'm scared to take any chances at all. They didn't gluten me in the hospital but the food was so difficult to eat. They were very careful, but that meant all of my food was plain and so dry. At one point I was putting pats of butter on the meat so I could gag it down. I ate so many snack packs just to get something down. Dry rice. Dry potatoes. Dry meat. Dry eggs. Dry, dry, dry. On the one hand I was so happy that they were so careful, but oh the dry just got me down.

When I have surgery I'm not sure what I will. It will be a shorter stay, but I'm going to have to figure out how to make my food more palatable.

I just needed to rant to my celiac peeps. I haven't posted much for awhile and I miss you. This board is so inspiring and you people are amazing!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

Well, that just completely *****s. You just really won the lottery on stupid, obscure diseases with this one. :angry::( But at least here is the excuse for the other problems.

That's amazing you managed to find a hospital that could do gluten free. I wouldn't trust any of them around here to be able to do that, and assume that any major illness would take me down if I don't have a relative there to constantly supervise. When I had day surgery a few years back, I told my spouse to not let them give me anything if there were complications and I had to stay longer, and I had packed some food in the car. Even if they had given me gluten free food, with my luck it would have been the commercial, manufactured type of things that also wreck me up because of ingredients I don't do. But I just sailed thru that surgery, phew.

jerseyangel Proficient
jerseyangel
Posted

You poor thing :( A few years ago I was in the hospital for surgery. I made meals before going in and froze in individual portions. My husband was able to bring me my meals (I cleared all this at the pre-op appointment--the nurses showed my husband where he could microwave my food on the same floor as my room and it worked out very well--there was also a fridge. I also brought individual cartons of Pacific broths, applesauce, Glutino crackers, etc and kept those right in my room in case I got hungry. The broth was perfect for after surgery when you may be limited to liquids.

Take care.

sandsurfgirl Collaborator
sandsurfgirl
Posted
  • Author

I know! I should've won the lottery with this nonsense! On the one hand I'm so grateful to have diagnosis on it now because just like celiac, Cushings patients go YEARS undiagnosed, but the affects are far more devastating and debilitating than celiac. My tumor is pretty tiny compared to some others I've read about. But it's just so unfair and I need to vent about the fact that my body was ravaged for FORTY long years from celiac and now I have to clean up the mess.

The food was one of my biggest fears but they were really careful. Actually I was at two hospitals. The first one had no endocrinologist on staff so they worked me up as much as they could and then they transferred me to another one to have an endocrinologist look over my case before I was discharged. He ended up being like most of the GI doctors we've seen... useless. Thankfully I'm seeing one of the best endo docs in the US, but I have to pay out of pocket and he is not cheap. After messing around with clueless GI docs for celiac all those years I will not fool around with this diagnosis. I went to the best and he is figuring it out fast.

Both hospitals did a good job with the safety of the food. Much of it is prepared at a facility and brought in just to be heated so there is no CC. They just use pretty much salt as a seasoning. But oh boy, plain chicken breast, plain rice, plain green beans, plain ham, plain roast beef... you get the picture. It got to where I wasn't eating much because I couldn't get it down.

When I have surgery on this stupid adrenal tumor I may try to bring some home cooked food in. Maybe my husband can bring me stuff I prepare ahead of time. It should only be a couple of days stay this time.

It is so frustrating to have to worry about being glutened in the hospital or not be able to eat out at all when you're sick with something else. I am sick and I have to cook every flipping day! My husband is gone 12 or more hours per day so I'm on my own with cooking.

kitgordon Explorer
kitgordon
Posted

I'm so sorry you have another health problem to cope with - it does seem SO unfair! I would try to get my husband to bring me food at the hospital if it were me. It's nice to see you posting again :)

Skylark Collaborator
Skylark
Posted

I'm so sorry to hear you have Cushing's. I'm VERY glad to hear it's not cancerous and they can treat it with surgery.

I feel your pain. I really could do without this thyroid autoimmunity. Isn't one autoimmune condition enough? I agree. We should get a pass. If you have celiac and manage the diet, you should get to live to a ripe old age with no other health problems and die peacefully in your sleep.

sandsurfgirl Collaborator
sandsurfgirl
Posted
  • Author

I'm so sorry to hear you have Cushing's. I'm VERY glad to hear it's not cancerous and they can treat it with surgery.

I feel your pain. I really could do without this thyroid autoimmunity. Isn't one autoimmune condition enough? I agree. We should get a pass. If you have celiac and manage the diet, you should get to live to a ripe old age with no other health problems and die peacefully in your sleep.

My thyroid readings were what led them to suspect Cushings. My TSH and T4 and T3 were all low. TSH should be inverse of T3 and T4. If all of them are low it can indicate Cushings. They thought I had a pituitary tumor but the MRI was clear. Then they found the adrenal tumor on a CT scan. Adrenal is easier to cure than pituitary, so I'll take the adrenal one!

I feel bad for not posting for awhile. Newbies need us oldbies to come encourage them. Actually I was doing really well until about 6 weeks ago when my health just crashed. I wrote two novels in the past year and a half. I was busting my tail looking for a literary agent and then whammo, things went nuts and writing is on hold.

Those are good ideas for the hospital. The broth and crackers can go a long way to help. Soups are good too. Maybe I can make a few different soups ahead of time and freeze them.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


pain*in*my*gut Apprentice
pain*in*my*gut
Posted

My thyroid readings were what led them to suspect Cushings. My TSH and T4 and T3 were all low. TSH should be inverse of T3 and T4. If all of them are low it can indicate Cushings. They thought I had a pituitary tumor but the MRI was clear. Then they found the adrenal tumor on a CT scan. Adrenal is easier to cure than pituitary, so I'll take the adrenal one!

Sandsurfgirl, I am so glad you posted about your problems, as I am going thru something similar right now and could use some insight! I recently saw an endocrinologist for Hashimoto's confirmation (I have it), and she ran my TSH, free T3 and free T4. My TSH was 3.8 (considered normal by her, even though I told her about the new recommended .3-3.0 range for TSH, she wasn't buying it :angry: ). What was concerning to her is my free T4 was low .7 (.82-1.77), but TSH was normal, so doc wants me to have an MRI of my pituitary. My cortisol was also elevated at 44 (2.3-19.4). She thinks this is because I am on birth control pills :blink: . I am thinking of asking her to do a 24 hour cortisol and possibly investigate my adrenal glands futher, just to be sure. I am worried about Cushings.

Did you have any symptoms with the adrenal tumor? I get this pain in my upper left abdomen, just under my ribcage that radiates thru to my back. It is in the exact area of my adrenal gland. I had an abdominal CT where I had to drink that stuff a few months ago, and I have also had a scope by my GI doc (they were thinking that this pain was GI related, but nothing showed up but a benign stomach polyp). Given my elevated cortisol, should I push for an MRI of the adrenals? Any additional testing I should ask for?

See, you never know who you can help when you share by venting! B)

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

When I got diagnosed celiac nearly two years ago I thought that was it, the answer to all my health problems. My health improved so much on the gluten free diet but I still couldn't lose weight and still had fatigue and a few other things. Now I find out I have an adrenal tumor (not cancerous) but it's secreting cortisol which means I have Cushings. I'm looking at surgery for it in the future. And I'm sick again.... especially in the morning. I spent 10 days in the hospital a couple of weeks ago.

I hate celiac and what it has done to my body. I was diagnosed at 40 and I have to wonder if celiac caused the tumor. And I'm angry because I feel like celiacs deserve a pass on all this other crap! It's not fair that doctors missed it for so long on so many of us and we have all these other things.

Can I rant with you? :blink:

In the last 3 months I have been DX with the following:

Celiac disease

Hashimoto's thyroiditis

Sjogren's disease

Rheumatoid Arthritis (early stages, thank God)

All of this is in addition to Premature Ovarian Failure, Endometriosis, Fibromyalgia (maybe I don't have this since I now have RA??), Degenerative Disc Disease, GERD and depression/anxiety. I am only 38 years old, for crying out loud!!! I can't even begin to list all of the tests that I have had in the last few months!! I am so OVER IT!!!

Like you, I was so excited when I found out about the Celiac....I thought it was the answer to everything, and all I had to do is change my diet. Then everything else came crashing down.....who know's what's next?? :(

Rant over.

sandsurfgirl Collaborator
sandsurfgirl
Posted
  • Author

Can I rant with you? :blink:

In the last 3 months I have been DX with the following:

Celiac disease

Hashimoto's thyroiditis

Sjogren's disease

Rheumatoid Arthritis (early stages, thank God)

All of this is in addition to Premature Ovarian Failure, Endometriosis, Fibromyalgia (maybe I don't have this since I now have RA??), Degenerative Disc Disease, GERD and depression/anxiety. I am only 38 years old, for crying out loud!!! I can't even begin to list all of the tests that I have had in the last few months!! I am so OVER IT!!!

Like you, I was so excited when I found out about the Celiac....I thought it was the answer to everything, and all I had to do is change my diet. Then everything else came crashing down.....who know's what's next?? :(

Rant over.

You must push for extensive Cushings testing. The pituitary MRI and the adrenal MRI too. Those tumors can be tiny. They need to do multiple cortisol tests to see is there is a pattern of high cortisol. My doc had me do four 24 hour urine collections, four 11 pm saliva tests, four 10 hour urines from 11 pm to 8 am and blood tests. Cushings is hard to diagnose and you need someone who knows what they are doing.

I don't know where you live, but the endocrinologist I see is a Cushings expert in Los Angeles. People fly from all around the world to see him. He's not cheap but he knows what to look for and he will find it if you have it. His name is Dr. Ted Friedman and his website is www.goodhormonehealth.com He teaches at UCLA and he's head of endocrinology at Charles Drew Medical University as a researcher there. If your docs are clueless about it or won't get all the tesing done he is a backup resource for you.

I'm 41, so I hear you about being too young to be this sick!

Feel free to email me. erikaoncam@yahoo.com

kareng Grand Master
kareng
Posted

SSG-

Happy to see you again! Thought you were off having a happy exciting life! Sorry to hear about the Cushings!

I think illnesses should be spread evenly throughout the population! That way everyone can have one! And nobody gets 2 or more! Would make people more sympathetic, too.

Coming on here and posting about your disease may help someone else catch it sooner.

anabananakins Explorer
anabananakins
Posted

When I got diagnosed celiac nearly two years ago I thought that was it, the answer to all my health problems. My health improved so much on the gluten free diet but I still couldn't lose weight and still had fatigue and a few other things. Now I find out I have an adrenal tumor (not cancerous) but it's secreting cortisol which means I have Cushings. I'm looking at surgery for it in the future. And I'm sick again.... especially in the morning. I spent 10 days in the hospital a couple of weeks ago.

I hate celiac and what it has done to my body. I was diagnosed at 40 and I have to wonder if celiac caused the tumor. And I'm angry because I feel like celiacs deserve a pass on all this other crap! It's not fair that doctors missed it for so long on so many of us and we have all these other things.

Since I'm sick again I'm not eating out at all for fear of CC and it is such a pain to have to cook everything and take food everywhere I go. I don't eat at that many restaurants anyways, but still I'm scared to take any chances at all. They didn't gluten me in the hospital but the food was so difficult to eat. They were very careful, but that meant all of my food was plain and so dry. At one point I was putting pats of butter on the meat so I could gag it down. I ate so many snack packs just to get something down. Dry rice. Dry potatoes. Dry meat. Dry eggs. Dry, dry, dry. On the one hand I was so happy that they were so careful, but oh the dry just got me down.

When I have surgery I'm not sure what I will. It will be a shorter stay, but I'm going to have to figure out how to make my food more palatable.

I just needed to rant to my celiac peeps. I haven't posted much for awhile and I miss you. This board is so inspiring and you people are amazing!

I'm so sorry to hear this - it's so unfair. I'm glad you've got such a good doctor now though. I hope you're doing well.

sandsurfgirl Collaborator
sandsurfgirl
Posted
  • Author

SSG-

Happy to see you again! Thought you were off having a happy exciting life! Sorry to hear about the Cushings!

I think illnesses should be spread evenly throughout the population! That way everyone can have one! And nobody gets 2 or more! Would make people more sympathetic, too.

Coming on here and posting about your disease may help someone else catch it sooner.

Hey! Good to see you! I was actually doing very well. Busy as can be with the kids. I wrote a couple of novels I've been shopping around. Easier to write without the brain fog. I've been meaning to come on and support newbies and then I've been too busy to do it. But now I'm laying low and resting a lot again. Back to the starting point I guess.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748
    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

      By Lkg5 · Posted

      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.