positive for celiac, but still waiting to have endoscopy to confirm

[Mhymer]

hi , I’ve had radio iodine to treat my grave’s disease and now I’m under active, I’ve recently tested positive for celiac disease, tTg was 91.4 ,the consultant said that it was a strong positive, I have felt terrible for years and years and just thought it was ibs , and to be honest the doctors were quick to just write it of as ibs , I can honestly say I’m dreading having the endoscopy done, does anyone have a rash on their elbows? ..they are not itchy and look round, I’ve also noticed what looks like blood spots around my ankles and feet , any advice would be appreciated, I haven’t started a gluten free diet yet as I have to wait for the endoscopy to be done,

[JanCymru]

Hi Mhymer,

So sorry to hear you're having a rough time. I was diagnosed Coeliac in 1998, after years of being fobbed off by GPs with an IBS diagnosis. It wasn't until I'd dropped below 8 stones (I'm 5'6"), and was constantly throwing up that I finally sought a private consultation and was diagnosed by endoscopy. Don't fear the endoscopy - you will be offered sedation to help you and if you can concentrate of breathing calmly and thinking of something else, you'll be fine. I've had both private and NHS endoscopies over the years and the nurses during the procedure I have found to be very supportive and calming.

You are quite right in avoiding a g/f diet until after the endoscopy as this could well skew the results. As to your rash, it could be Dermatitis Herpetiformis which some Coeliacs have (I don't, but a friend did). I would strongly recommend you join the Coeliac Society in the UK (coeliac.org.uk/home/), they are very supportive and you will find all the information you need on managing your Coeliac condition and also there is a great section on Dermatitis Herpetiformis, so check out the website.

You should be referred to a dietitian to help you get started with g/f food and diet, and what pitfalls to watch out for - hidden gluten for a start which turns up in a surprising amount of food!

Depending on where you are, you should received a g/f food allowance (points system for gluten free staple items), or a pre-loaded credit card type arrangement allowing you to buy g/f items in mainstream shops.

I'm happy for you to message me directly if you need any more information which might help,

Best wishes,

Janice

[Mhymer in reply to JanCymru]

Aww thank you for getting back to me so quickly, I will join the group you recommended to me , I can’t believe all this time I’ve been struggling with it, I was on holiday end of last year and every one thought I had food poisoning, because the symptoms were lasting so long, , i will definitely be getting in touch with you, and thank you for your support and understanding, hopefully I after my endoscopy next week and the results come through I will be able to start working on what to do next. Thank you again

[JanCymru in reply to Mhymer]

Happy to help Mhymer knowing just how ill you can feel. Do be aware that autoimmune conditions tend to travel in packs! Shortly after being formally diagnosed Coeliac although I began to put on weight and stopped being sick, I still found I was bone-weary exhausted. Fast forward another private referral, and discovered I had Pernicious Anaemia (now renamed Autoimmune Gastritis by NICE), so if you feel you aren't recovering as well as you think, don't put off asking for bloods etc., If you do find you have PA (autoimmune Gastritis), join the Pernicious Anaemia Society, based in Bridgend. They have a very supportive team and website, and forum, here on Health Unlocked. Hope all goes well next week, keep us all posted too.

[Welshtoffee]

Hi I have also been diagnosed as coeliac. My anti Ttg blood test normal range 0_20 was 1111.! I was referred for an urgent endoscopy to confirm. Like you I was dreading going for one. I had a letter from the hospital saying that I didn't need one to confirm coeliac disease as the result was a strong positive. Was advised to go on a gluten free.diet and was referred and had a group chat with a dietician. I also asked for and had a 1 to 1 phone chat with a dietician also as I have other dietary issues as well.

I don't have a rash , just started being sick around a year ago a couple of weeks after been diagnosed with diverticulitis. Nothing at all before that. Both the gastric conditions have resulted in B12 malabsorption which I have to have regular B12 injections.

Still waiting to see consultant at the hospital( 9 months) but managing the situation with help of my son also coeliac (with completely different symptoms) and as previous post said coeliac UK are very useful to contact by phone or on their website.

All the best

[angelias]

I’ve also suffered from symptoms for several years before testing again for coeliac disease. I had excluded it because many years before my sister was diagnosed and my blood test’s results didn’t show any antibodies to gluten. My advice is to carry on with the “normal” diet until you do all the necessary examinations. It will take some time to feel better after you start a gluten free diet and it’s possible that some “damages cannot be fixed” because of the length of time you’ve ingested gluten. In any case just make sure you have a healthy diet after diagnose, and don’t exceed in sugar and salt. Be strong and all the best!!

[CATRYNA49]

If you have a rash it would be a gluten allergy, but if is chicken pox looking blisters that itch and or burn it is the Celiac accompanying skin disorder Dermatitis Herpetiformis or DH. In that case, you do have Celiac and do not need an endoscopy. You will need to not only go off of all gluten, but all grains, soy, anything with yeast or mold, and anything high in iodine and that means iodine contrasts and foods high in iodine such as shellfish, etc. Also, many topicals can create problems for us especially shampoos and conditioners because of their inclusion of tocopherols, etc that are sourced from grains. If you are not in the habit of reading all labels on products you buy you will need to become so, for the wellbeing of your health.

Here is an article that I found a few years ago that I hope you find helpful.

WHEAT NAMES IN HAIR PRODUCTS

Buying only gluten-free shampoo and other hair care products could save you from several "mystery glutenings" a year ... or more, depending on how sensitive you are to trace gluten.

Unfortunately, hair product manufacturers regard gluten grain ingredients as healthy for your hair, and therefore use them frequently and liberally in shampoo and conditioner. Gluten also appears in hair spray, mousse, and other styling products, since its "glue" properties help hold your hair in place.

There are literally thousands of hair care products on the market today. To help you determine which ones might be safe (and which ones to avoid), I've provided a list of manufacturers that make reliably gluten-free products, plus a list of common ingredients that indicate gluten in shampoo and other products.

Brands That Offer Gluten-Free Hair Products

Fortunately, there's a nice mix of brands that now make gluten-free hair care products, including some budget brands and some more expensive lines.

The following brands of hair care products offer gluten-free shampoo and conditioner:

• Acure. Acure's entire hair care line is gluten-free, including five shampoos and even a dry shampoo (plus the accompanying conditioners). Acure is also sulfate-free, paraben-free, cruelty-free and vegan. If you can't find it locally, it's available online at Amazon.

• Avalon Organics. This all-natural line of hair care products offers one shampoo that's certified gluten-free: its Gluten-Free Cucumber Shampoo. Avalon Organics also offers Gluten-Free Cucumber Conditioner to pair with the shampoo. The hair care line is vegan and cruelty-free. It's readily available online if your stores don't carry it.

• Desert Essence. The company makes six shampoos that are labeled gluten-free: Green Apple and Ginger, Fragrance-Free, Red Raspberry, Lemon Tea Tree, Italian Red Grape, and Coconut. It also makes conditioners to pair with each of those. The products are vegetarian, and Desert Essence doesn't test on animals.

• Dove. Dove, which makes tons of personal care products, is a Unilever brand, which means it will clearly disclose any gluten-containing ingredients. Many of Dove's shampoos and conditioners are gluten-free. They're also reasonably priced and available everywhere.

• Jason. Not everything Jason sells is gluten-free, but the brand's Gluten-Free Daily Shampoo and Gluten-Free Daily Conditioner meet the standard (as do the other seven products in the brand's certified gluten-free line). Look for the bright green labels — the gluten-free line is available on Amazon if your local store doesn't carry it. Jason's products aren't tested on animals.

• Kirkland Signature. This Costco brand includes a Professional Salon Formula Moisture Shampoo, and it's labeled gluten-free and vegan.

• Paul Mitchell. Several of this brand's shampoo and conditioner products are considered gluten-free, including Forever Blonde shampoo (but not conditioner), Spring-Loaded Frizz-Fighting Shampoo and conditioner, and Baby Don't Cry Shampoo. To check a specific Paul Mitchell product, you need to visit the brand's website and look in the "details" section for that product. Paul Mitchell is also cruelty-free.

• Pravana. All of Pravana's Nevo hair care products are labeled gluten-free (the line uses hydrolyzed quinoa and soy protein). They're also vegan. Look for Pravana at hair care salons (including Ulta stores).

• Suave. Like Dove, Suave is a Unilever brand, so any gluten-containing ingredients would be disclosed in the ingredients list ... but most or all are gluten-free. Suave is available everywhere and offers some kid-friendly shampoo/conditioner/body wash combinations.

Ingredients That Mean Gluten In Shampoo and Other Products

If you see one or more of the following terms in the ingredients list, it means the shampoo or other hair care product contains ingredients made from wheat, barley or rye. I've also included ingredients that indicate oats, since many of us need to avoid them, as well.

Avena sativa (oats)

Beta glucan (frequently derived from wheat)

Colloidal oatmeal

Dextrin palmitate (starch, possibly gluten-based)

Vitamin E (frequently derived from wheat)

Hordeum vulgare (barley)

Hydrolyzed vegetable protein (may contain wheat)

Hydrolyzed wheat protein

Laurdimonium hydroxypropyl (hydrolyzed wheat protein)

Malt extract (usually barley)

Secale cereale (rye)

Stearyl dimonium hydroxypropyl (hydrolyzed wheat protein)

Triticum vulgare (wheat)

Vegetable protein (may contain wheat, barley, rye and/or oats)

Wheat germ oil

The absence of any of these ingredient names doesn't necessarily mean the product is gluten-free — there are numerous other chemicals (some with very difficult-to-pronounce names) that can be derived from wheat, barley, rye or oats. Gluten-based ingredients can also hide behind catch-all ingredient names such as "fragrance," and the components of these may be a closely-guarded trade secret.

Choosing A Gluten-Free Shampoo and Conditioner

What if your favorite brand isn't listed above, and you're not sure you can trust the ingredients list? Try calling the manufacturer to ask if it's gluten-free or not. People seem to have mixed luck getting information from personal product manufacturers about gluten ingredients, although this problem is beginning to resolve as awareness of continues to rise.

[Mhymer in reply to CATRYNA49]

Wow !! I didn’t realise that it could be in products like these … this is mind blowing I have so much to learn , I also started with blood spots on my feet and ankles at the same time, they are both very strange , neither were itchy but the ones on my elbows were a little painful. I can’t believe I’ve suffered all these years and all along it could have been avoided.

I took a photo of the blisters/rash , they are starting to go away now,

[CATRYNA49 in reply to Mhymer]

That may very well be DH on your elbow.