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

Just Joined, Fiance Diagnosed With Celiac


tannilisa

Recommended Posts

tannilisa Rookie

Hi, I just now found this message board after doing a search and I'm glad I found this :) My fiance, soon to be husband next month, was diagnosed with celiac yesterday, I went with him to his new GI doctor after a blood test came out postive for celiac. His mother was also diagnosed last year and has severe osteoporosis, she is 63 yrs. old, so she was diagnosed later in life. I suspected he had the same thing after bouts of diarrhea and he would get stomach bloating, gas, and pains, so he finally told his doctor about his mother having it, and that's when they ran the test. His doctor is exellent, and he himself has celiac, we were in the office for an hour, his wife is also a doctor and works with him, she teaches how to cook for celiacs and told us where to go for gluten free food, they went through everything with us and gave us a information packet with allowed foods, and not allowed foods. It's all a bit overwhelming and confusing and I have no idea where to start, it's certainly going to be a challenge starting this gluten free diet :blink: The good thing is that he doesn't really like pasta, breads, sweets or pastries anyway so that will be easy, the hard part will be all the hidden gluten in foods and cross contamination in resteraunts, he's now afraid to eat out. I wanted to get more info. about how to cope while eating out, and also what spices are safe and which ones are not? Thanks for any info :)

Tanya


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



Celiac.com Sponsor (A8-M):



debmidge Rising Star

Tanya, You've come to the right place. Everyone who is on this board gives of their experience and knowledge freely.

My husband was just diagnosed almost a year ago and it's a whole new world. He had raging symptoms for years and doctors mis diagnosed as IBS for 27 years. He has yet to eat in a restaurant yet because he still can't get his symptoms fully gone. Your fiance might be different. I suggest your review the posts under Restaurants.

Most of the info you need will come from the manufacturers themselves. I've been calling them all year to verify if something is gluten free or not. The vague answer is "This product is made in a plant that also handles gluten products, so we can't guarantee that this particular product isn't cross contaminated."

The Celiac Sprue Assoc. (www.csaceliacs.org) puts out an annual manual that provides info on mainstream foods and if they are gluten free. It costs about $30 and you can download an order form at their site. It's in a binder book.

There are other gluten free lists and you will notice that other members of this board have posted their websites in other sections of this entire board site. Take a hour or so to review the posts in the Ingredients board and Coping board. It's worth the time.

Best wishes.

D.

Guest Lindam

Hi Tanya,

Welcome to the most wonderful site! I was diagnosed in March '04 and my head was spinning. I didn't know where to start. The best place is this forum. Everyone hear speaks from experience and have so much knowledge. Within this forum there is also the food lists that are mainstream. If you go the main page, site index, the third or fourth listing is the foods that we can eat. That was great big help to me. I have not yet gone out to eat yet. I am still very scared that I will get sick. But if you want, here is the link to go to a website that you can download restaurant cards. I printed them out a bright colored paper and then laminated them. If you go to Open Original Shared Link and on the left side of the screen there is an icon for restaurant cards. I hope this helps. This way I can give it to the wait person and the chef can see it without ruining it.

I printed a bunch of these out and gave some to my GI doctor who was so grateful.

May I also add that the best support that I get is from my family and friends. This is a learning experience to me as well as them.

I wish you all the best.

Good luck!

Linda

lovegrov Collaborator

If you decide to get that CSA book I'd wait a month or two. I think the one out now is almost a year old.

You might also check out this place:

Open Original Shared Link

This is another forum you can join. Or you can pick up info (but not post) as a guest. If you scroll down the start page you'll find Celiac & Forum FAQs. Go there and scroll down and you'll find all kinds of helpful documents, including places to look for hidden gluten and contamination and a list of the companies that clearly list gluten in ingredients. All you have to do is read the label.

You'll also find a gluten free product list maintained by members of the forum. Some of the listings are old but many are fairly recent.

If your fiance was just diagnosed he really shouldn't go out to eat for a while. Eating out is VERY risky, even at the best places. He needs to heal and get used to how to handle the diet first. Eat fresh meat, vegetables and fruit for a while.

The social part of celiac is always a challenge (though certainly not impossible) but shopping and eating at home becomes a breeze.

richard

tannilisa Rookie

Thanks a bunch for your replies :D last night was his first gluten free night, which he didn't mind at all, he loves rice and meat and salads with oil and vinagar, we probably won't be out to eat for awhile until he gets used to the diet at home, his mom is still having a time with the diet, but is getting better at it, she has a bunch of cookbooks that she's gonna let us borrow. I also was tested last month for celiac, because of severe digestive problems, they thought I had crohn's, but the colonoscopy came out negative. I haven't heard anything yet, so I'm assuming the test came out ok (I hope!). Thanks again for your info, it's a big help and much appriciated :)

-Tanya

jendenise Rookie

You mentioned that you are getting married next month. Have you thought about a little gluten free bride & groom cake so that you two can still do the slicing of the cake and all that good wedding stuff? If you can't find a baker who can help you, you may want to start experimenting and try to make your own. Maybe the cake decorator can still decorate it if you explain the situation, just let them know that cross contamination is an issue. Also, let your fiancee know that malted drinks (beer for example) are no no's too. If you find that your wedding menu doesn't offer anything for your fiancee to eat you might want to go online to amys.com or glutensolutions.com, or glutenfreemall.com and maybe order something that's microwaveable or easy to prepare for him. Good luck, I hope you have a beautiful wedding.

tannilisa Rookie

Yup, we're getting married next month on the 9th :D luckily, my fiance's mother is a professional cake maker/decorator, so she'll be doing ours, and she has all the ingredients for a really tasty gluten free cake :P we really lucked out! Thanks for the wedding wishes! :)

-Tanya


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



Celiac.com Sponsor (A8-M):



jendenise Rookie

Wow, that's great! My fiancee and I have been putting off getting married because we're opening a new business and we just moved, and all the fun stuff that goes with it. But maybe you could give me some info about your mother in law and where she's at (I'm in Las Vegas) and when we finally decide to get married maybe I could contact her???It would be great to be able to fully trust someone else regarding food preparation for our wedding.

  • 1 month later...
wifeofceliac Newbie

I noticed in your posting that you mentioned that your fiance likes his salads with oil and vinegar. My husband is a celiac, and I was told that the only vinegar that he can have is apple cider vinegar. Is this true? When you're not allowed to have viniegar it limits alot of items. Maybe I was mislead, we've been doing without vinegar for about 2 years now. Some advise please. Or do you make your dressing with apple cider vinegar?

Thanks,

Dana

crc0622 Apprentice

Tanya - how did they test you for celiac? You mentioned a colonoscopy for crohn's but you'll need very specific blood tests and/or an endoscopy for celiac.

Dana - he can have any distilled vinegar. The only big no-no is any malt vinegar, as it is made from barley.

Hope this helps!

Celeste

Guest DaiseeLove
Hi, I just now found this message board after doing a search and I'm glad I found this :) My fiance, soon to be husband next month, was diagnosed with celiac yesterday, I went with him to his new GI doctor after a blood test came out postive for celiac. His mother was also diagnosed last year and has severe osteoporosis, she is 63 yrs. old, so she was diagnosed later in life. I suspected he had the same thing after bouts of diarrhea and he would get stomach bloating, gas, and pains, so he finally told his doctor about his mother having it, and that's when they ran the test. His doctor is exellent, and he himself has celiac, we were in the office for an hour, his wife is also a doctor and works with him, she teaches how to cook for celiacs and told us where to go for gluten free food, they went through everything with us and gave us a information packet with allowed foods, and not allowed foods. It's all a bit overwhelming and confusing and I have no idea where to start, it's certainly going to be a challenge starting this gluten free diet :blink: The good thing is that he doesn't really like pasta, breads, sweets or pastries anyway so that will be easy, the hard part will be all the hidden gluten in foods and cross contamination in resteraunts, he's now afraid to eat out. I wanted to get more info. about how to cope while eating out, and also what spices are safe and which ones are not? Thanks for any info :)

Tanya

Hi, welcome to the forum; I'm new here too. I hope your fiance is doing well. I was recently diagnosed and it HAS been difficult.I, too, am engaged: much luck to you both!! :-)

Archived

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

  • 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. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    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

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.