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So Many Probs Since Being Diagnosed

souix

By souix
in Coping with Celiac Disease

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souix Newbie
souix
Posted

at the end of my tether for my poor hubby who has been diagnosed with celiac for nearly 2 yrs. he now has rhuematoid arthritus dermatitous, massive weight loss in the las couple of months, sleep deprevation,depression,sensative mouth, has a ra cing heart(which is ok) has lumps on his breast tissue, has profound lethargy does anyone else have this experience of muliple probs incidently he is allergic to steroids and his consultant injected him in november with a long term sloww acting injection, i find myself crying often with him at our delemma, pleeeeze help if you can to advise or support us. i feel we are drowning in all this...he is having his 3rd endoscopy next week his liver enzymes are raised and a scan has shown no probs structually., also having probs with swallowing and has loss of muscle mass.

thanx in anticipation sue

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Mtndog Collaborator
Mtndog
Posted

Oh Sue- I'm so sorry for all the trouble your hubby and you are having. Was he this sick when he was diagnosed or has he gotten worse? It's common for people with celiac to develop other autoimmune problems like thyroid, diabetes, RA.

Why was he given a steroid injection- for the rheumatoid? I wonder if that has contributed to his problems (a bad reaction)?

The sleep, depression and weight loss could be thyroid. It could be, but I hope it's not, refractory sprue which is celiac that does not heal despite staying gluten-free. It's rare but possible. Has he been checked for Chrohn's, colitis and microscopic colitis? What did his first two endoscopies show?

What you are going through is ver scary but believe it or not, there are people here who have been in the same situation themselves. I'm going to move your post to "Coping With" because it will get more attention there. Hang in there, don't stop until you find answers and post here with ANYTHING you want to know about.

souix Newbie
souix
Posted
  • Author

thanx for you qik reply...jon has steroid injection AFTER he told the consultant he had already had a reaction to steroid tabs and ended up in hosp not 4 weeks previous ..he didnt believe him!!!!!...his last endoscopy showed villi damage and so was diagnosed celiacs...i think they are now saying he has exposure to gluten but i dont know where from im sooo careful. im careful bout x contamination and dont buy any processed food unless i know it is safe, i have now segregated part of the kitchen just for jons food...my poor man looks like a victim of a pow camp. he has no spare weight to loose so you can imagine my concern...honestly i would never ever imagined just how awful this could all be.

Lisa Mentor
Lisa
Posted

thanx for you qik reply...jon has steroid injection AFTER he told the consultant he had already had a reaction to steroid tabs and ended up in hosp not 4 weeks previous ..he didnt believe him!!!!!...his last endoscopy showed villi damage and so was diagnosed celiacs...i think they are now saying he has exposure to gluten but i dont know where from im sooo careful. im careful bout x contamination and dont buy any processed food unless i know it is safe, i have now segregated part of the kitchen just for jons food...my poor man looks like a victim of a pow camp. he has no spare weight to loose so you can imagine my concern...honestly i would never ever imagined just how awful this could all be.

I too am sorry for your difficulties. There are other causes for blunted villi. Have these options been ruled out:

Open Original Shared Link

Although villous atrophy is not exclusive of celiac disease, it is considered a crucial finding. Other causes of blunted villi include tropical sprue, malnutrition, intolerance to cow's milk, soy protein intolerance, and infectious gastroenteritis. However, most of these conditions can be readily excluded on the basis of clinical history and laboratory data.

Have your eliminated dairy from his diet?

blancasagro Newbie
blancasagro
Posted

Since I was diagnose I had many many problems, now I go to five different doctors, but everything is getting better, slowly but better. I haven't been diagnose with any other condition but I have been referred to neurologist for seizures, to the best GI here for microscopic colitis, to psychologist and psychiatrist for panic attacks...I would say the first 4 months were horrible I only weight 96 pounds. I quited gluten, lactose, all artificial colors and flavors,all processed meats, all tomato products, acid juices (orange and pineapple) I ate fruits, veggies and chicken breast for weeks, then I started to feel better. Right now I have some chocolate once in a while, and some orange juice, but I recommend to be very strict while the body heals. Last time I end up in the hospital I ate 100% gluten free products but my body wasn't prepare for gluten free canned meat, I never eat hot dogs or ketchup, for me is worst than gluten. I had that advice from a coworker, she was diagnose when she was 19 years and now she is more than 4o, so is very good advice. I just eat fresh veggies and fruits, fruits like bananas, prunes, apples... oranges just once in a while. I just eat fresh meats, with no season just with salt and fresh spices. And be patient, I was hospitalized for the panic attacks, because I had serious sicknesses, memory losses, sleeping problems, mental fog... but 8 months later I can say everything is almost gone ;) be patient and strict with the diet and you will see results

souix Newbie
souix
Posted
  • Author

jon seems so much worse since the steroid injection. i have talked to him about the dairy thing and he feels so ill at the moment that he feels unable to tackle eliminating it at the mo, we are going to see what the reults of his endoscopy is and then have a go...he isnt a big friut eater but loves freash veg...the mind fog is also a big issue especially at night when he will wake and not be able to string a thought together and give rational account...this morning he has risen from a good night kip but he is sooooo lathargic has no stamina andlow in mood, thank you for replying to me in my desperate hour of need it is lovely to find constuctive advise and support which i was beginning to feel i would never find...sue xx

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