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Recently Diagnosed

kkrell

By kkrell
in Coping with Celiac Disease

Recommended Posts

kkrell Rookie
kkrell
Posted

Hi- I found out last week that I have Celic Disease. For almost 7 years numerous doctors have not been able to find anything wrong with me and one specialist even went so far as to tell my parents that maybe I was making this up. I am relived to discover that I actually have something and I am just being the process of trying to go gluten free. I have checked hundreds of website and some to have discrepancies and what you can and can't eat. If there a list that you can buy or something that tells you what to avoid? For instance one website says balsamic vingear is ok and another says that it isn't. There is just so much information that I don't know where to start. I can say this much...I have been gluten free for 3 days and I already feel better.

Another question...how long does it take for the bloating to go away? Also, I was diagnosed based upon my blood work, is that enough? Will they have to do a biopse of the intestines and if they do does it hurt? Any advice or suggestions would be greatly appreciated. Thank you!!!

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KaitiUSA Enthusiast
KaitiUSA
Posted

https://www.celiac.com/st_main.html?p_catid=12

Here is a link to safe and forbidden ingredients for celiacs.

Alot of sites have information but alot of them are old and outdated so that may be one of many reasons for conflicting info.

If you go to the product section here there is section about the Delphi product list. This is a must get! It has great info., is 79 pages long, and free

The time that symptoms go away varies among person to person. It took me 3 months for my symptoms to get alot better then a few more to get back to normal. Some peoples go away quicker then that and others it takes longer.

A blood test is good enough for a diagnosis. There are certain blood tests that are very specific and the false positive rate is extremely low. For alot of doctors a blood test will be proof enough for a diagnosis.

I was diagnosed by blood tests and I also carry a main gene for celiac.

Some doctors want to do a biopsy to see about damage and will not give a diagnosis without a biopsy. The only problem is that if it comes back negative that does not mean you do not have celiac, that just means you may have no damage yet or sporadic damage that they missed. I guess they can be good to figure out how much, if any, damage you may have. I did not have one done but some people on here have and of what I hear it's a simple procedure but they can fill you in more on that.

This is a great site for info..its a big change but its not as overwhelming as it may seem.

Things like lipstick and other things you put on your face,head,and hands should be checked because they have a high chance of getting into your mouth. You will find great info about everything on here. Don't hesitate to ask questions on here and you can always email me or contact me if you need anything as well.

Good luck :D

Guest jhmom
Guest jhmom
Posted

Hi kkrell and welcome to the board. Being dx by blood work should be enough for most docs but some still want the biopsy ;) I was dx almost 2 years ago, at first it seemed very overwhelming but it was worth all the trouble, hang in there it does get better! I would suggest at first you stick to fresh meat, fruits, veggies and items you KNOW are gluten-free (clearly marked) until you get the hang of reading labels, etc. :D

Here are some helpful links:

Safe and forbidden ingredients and food list

Mainstream Gluten free product list

Open Original Shared Link

celiac3270 Collaborator
celiac3270
Posted

Welcome!

Delphi Forums List

If you PM or post your e-mail address, I'll send you a 79 page word document of gluten-free products in the US. If you'd rather download it from the site itself, since I realize that in this day, you might not want to download a file sent from someone you don't know, follow these steps:

1) Go to the website, Open Original Shared Link

2) Click on "messages" or "start reading"

3) Select the folder "gluten-free Product List"

4) Click on the topic called "Downloadable files word"

5) Of the four options, choose the one in the upper right.

I think this is the best list.

Sholland Lists

There are two other lists, also, for foods and medications. These aren't always 100% accurate, though, so be careful

Open Original Shared Link

Open Original Shared Link

Gluten Free Drugs

This is the best medication list for the US:

Open Original Shared Link

CSA Product Listing

I don't really recommend it because you have to pay for it and there are already some great lists that are free, but:

Open Original Shared Link

Clan Thompson Booklets

Pretty cheap, quite good--but the Delphi list is free and better:

Open Original Shared Link

And the following companies clearly list gluten: in other words, wheat won't be hidden under an ambiguous name like "natural flavors" or "food starch"

Aunt Nelly's

Balance

Baskin Robbins

Ben & Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Edy's

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman's

Hershey

Hormel

Hungry Jack

Jiffy

Knorr

Kozy Shack

Kraft

Libby's

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely's

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain's

celiac3270 Collaborator
celiac3270
Posted

LOL, we all posted within three minutes of each other :lol:

printmaker81 Rookie
printmaker81
Posted

Hi,

I was just diagnosed too, on the same day you posted. I'm feeling just as lost as you are in a world where everything seems to be laden with something that will make me sick. However, I did read a good book that not only helped me feel better about my new lifestyle but also had tons of good suggestions and even lists of good products, companies and restaraunts. It's called The Gluten-Free Bible by Jax Lowell. I think it had been previously published in a somewhat shorter form called Against the Grain. It was pretty straight forward and an easy-read.

Good luck!

celiac3270 Collaborator
celiac3270
Posted

Open Original Shared Link

I would not urge you to read or buy the Gluten Free Bible or Against the Grain (see above thread).

I would recommend Wheat-Free, Worry-Free by Danna Korn or Gluten-Free Diet: A Comprehensive Resource Guide by Shelley Case

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    • Wends
      Ocd making gluten fears unmanageable. Need advice

      By Wends · Posted

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But I want to knos if it would be enough to do damage.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful?” NO and YES. What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
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      By maryannlove · Posted

      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
    • Mrs Wolfe
      Cartilage and rib pain.

      By Mrs Wolfe · Posted

      I appreciate the information and links.  
    • Mrs Wolfe
      Cartilage and rib pain.

      By Mrs Wolfe · Posted

      Thank you for the information.   
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