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

So Many Probs Since Being Diagnosed

souix

By souix
in Coping with Celiac Disease

Recommended Posts

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

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

Celiac.com Sponsor (A8-M):


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

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    2. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    3. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    4. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
    5. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,289
    • Most Online (within 30 mins)
      7,748
    SarahZ
    Newest Member
    SarahZ
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • 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.