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

How Do You?


emmybeans

Recommended Posts

emmybeans Newbie

I'm pretty new to this. My Dr. is a flake! I've mentioned the possibility of celiac to him and he just says "hmmmm.." this after I've had years of stomach problems and no answers.....After reaing a lot of the posts here and doing some online research I'm convinced that this is what it is. I have been diagnosed as IBS -D and gastritis, Gerd and have also been experiencing achy muscles/joints, headaches, chronic diarrhea (sorry TMI) When I was pregnant with my last child I was found to be borderline gestational diabetic so I went to a nutritionist who put me on a very low carb diet. My symptoms were gone. Last year I went on an atkins like diet and all my symptoms were gone, and I lost 13 pounds pretty quickly. I find that every once in a while I can have bread, gluten whatever and it doesn't bother me, but if I've had too much it takes a long time to get it all out of my system, and one little thing (like the handful of pretzels I had yesterday) sends me into severe stomach pains. Does anyone have any ideas for quickly ridding the body of the negative effects of gluten? I'm having a really bad week and my stomach is killing me..I just want it to go away quickly!!! How do you get your mindset into not consuming gluten? Does that make sense? I feel like a heart patient or a dialysis patient that is supposed to be on a restricted diet but can't stick to it. I know what helps me feel better, but I hate not being able to eat my favorite foods!!!! Old habits die hard! Does anyone have a suggestion for a good book/cookbook? What do you eat for breakfast? When I was on the atkins like diet I had a great recipe for pancakes and crepes that was made with protein powder, but I can't find it. I used the crepes like bread for everything. I made a ton of them at he beginning of the week and either put tme in the fridge or freezer when I needed them. They are great with pb & low sugar jelly. Have all of you been officially diagnosed? What are the options for testing? I have been reading about a colon biopsy? (thanks but no thanks) along with blood tests. Do you have to be consuming gluten for the blood test to be accurate? Has anyone tried the saliva test? Ok I guess that's all my questions for now..sorry there are so many..I'm just amazed by all of this and glad that after knowing in the back of my mind that gluten was the culprit for years, that I've finally figured it out.


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast
Have all of you been officially diagnosed? What are the options for testing? I have been reading about a colon biopsy? (thanks but no thanks) along with blood tests. Do you have to be consuming gluten for the blood test to be accurate? Has anyone tried the saliva test? Ok I guess that's all my questions for now..sorry there are so many..I'm just amazed by all of this and glad that after knowing in the back of my mind that gluten was the culprit for years, that I've finally figured it out.

I have been officially diagnosed but there are some people on here that have not. You should get a complete celiac panel done which includes:

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

Most doctors only order a partial celiac panel which can miss a diagnosis.

After the blood test they usually want a biopsy to confirm. The problem is if the biopsy comes back negative you can still have it and just not have damage yet.

The blood tests in my opinion are the best option and the tTG and EMA are very specific for celiac.

I was diagnosed with blood tests and a gene test.

You do need to be on gluten heavily for a good 3 months to get accurate testing.

Celiacs who do not follow the diet have 40-100 times more of a chance to get cancer,and other life threatening or disabling illnesses. (thats enough there to keep me in line) gluten=feeling like crap and damaging myself, no gluten=feeling good and no damage

It does sound like you have a problem with gluten.

If you have any other questions feel free to email or IM me. :D

jenvan Collaborator
Celiacs who do not follow the diet have 40-100 times more of a chance to get cancer,and other life threatening or disabling illnesses.

What Kaiti said is always enough to keep me on the diet. I think of greatly increased chances of lymphoma and picture myself with one of those colon-bags. "Yikes!" I think. (Sorry if that's crass!)

tarnalberry Community Regular
Does anyone have any ideas for quickly ridding the body of the negative effects of gluten?

How do you get your mindset into not consuming gluten? ... Old habits die hard!

Does anyone have a suggestion for a good book/cookbook?

What do you eat for breakfast?

Have all of you been officially diagnosed?

What are the options for testing?

Do you have to be consuming gluten for the blood test to be accurate?

Has anyone tried the saliva test?

1. Quickly ridding the body of gluten - nope, not really. In the case of a celiac, it's not so much that you still have gluten in your system as the cascade of chemical reactions that is your immune system is still running. You can do supportive things to help your body - eating easy to digest food, making sure to get plenty of rest, making sure to take your vitamins, staying hydrated, and so on. Other than that, you mostly need to let it run its course.

2. Mindset of not consuming gluten - I think about a) the symptoms that detract from my life if I do eat gluten, B) the increased risk of premature death, usually accompanied by painful, unpleasant conditions preceeding that premature death, c) trying to live with osteoporsis and anemia for decades and being miserable, and d) all the fabulous foods I can have. But you hit the nail on the head - "old habits die hard". Gluten - eating foods with it - IS just that, an old habit. There are some cultures that pretty much don't eat wheat, so it's not a problem for them to not eat it, but most of us are used to it, so it's a big change to cut it out. But habits can be broken, and new habits can be formed. It takes time - on the order of months - but you can do it by practice, practice, and more practice.

3. Good cookbooks - I like Open Original Shared Link myself, as I'm also dairy free. It's recipes and format suit my style and it has a good amount of generally useful information about speciality ingredients (e.g. which flours thicken well, which don't), but it does use some harder to find flours. Bette Hagman also makes a number of cookbooks that many people here like and I've found interesting recipes in two of her books: Open Original Shared Link and Open Original Shared Link. I also like Open Original Shared Link for general reference on many pre-packaged items and a few very good recipes.

4. Breakfast - oh, I have a wide range of things. Pancakes and waffles certainly aren't off the list, you just need to make them with gluten-free flours. My favorite is amaranth pancakes, and I like making waffles from a combination of amaranth, quinoa, and quinoa flakes. Most days I don't have time to cook pancakes or waffles, however, so I'll have things like rice cakes with peanut butter, or hot cereal made with soy milk and vanillan and cinnamon (hot cereal being any on of, or a combination of, the following: millet grits, Bob's Red Mill Mighty Tasty Cereal, buckwheat grits, quinoa flakes, soy grits, rice grits), occasionally Kashi's Cranberry Sunrise cold cereal, fruit smoothies, homemade energy bars, or left-over rice with soy milk and dried fruits and nuts. On the weekends, I may cook the pancakes or waffles, make muffins, have an omlette, or cook something less breakfasty. Breakfast need not be made of breakfast foods! ;-)

5. Officially diagnoses - I don't know whether or not my doctor has "officially" written it on my record, but my PCP did the blood test, saw the results (after two weeks gluten-free) come back inconclusive, suggested I do a gluten challenge, and said "guess you should stay off the gluten" when I told her that I definitely didn't feel well afterwards. My allergist doesn't really believe me (but I don't care), but the other doctor I see most often is "not surprised". I don't care to do an biopsy.

6. Options for testing - blood tests (relatively reliable, next-to-no chance for a false positive, definite chance for a false negative), biopsy (old-school gold-standard, relatively reliable for classic celiac disease, but the accuracy varies greatly with who read the slides and it won't catch very early stage celiac, or the varieties of gluten intolerance which don't seem to do significant intestinal damage), stool test (primarily through Enterolab, which isn't highly respected at wide in the medical community yet, but they're doing further research on the testing method), and dietary challenge (try the diet strictly, for two months, then try gluten - this is a real test, and it is technically an important diagnostic criteria (that most docs poo-poo) in determining gluten intolerance).

7. Consuming gluten for accurate testing - absolutely. The tests look for a reaction to gluten; if you're not consuming gluten, there will be no reaction. You need to have been consuming the equivalent of 2-3 slices of bread a day for approximately 3 months prior to testing for a reasonable confidence of accuracy.

8. Saliva test - haven't heard of it.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748

    LowellFrancis
    Newest Member
    LowellFrancis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.