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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Has any one tried the Helgas gluten-free bread? I saw it while I was in Adelaide but haven't seen it in Brisbane yet. Admittedly I have only looked once.

I tried the Genius bread a while back and found it very dry and broke apart when I buttered it after toasting. I wasn't a fan. I have gone back to the Golden Hearth bread for now. Still tastes like eating a sponge though.

I have been avoiding buying Coles gluten-free products as I have noticed they are pushing out competitors. Other brands now have a tiny section at my supermarket and there is a sea of coles brand. From what I have tried, the pasta was terrible and fell apart , and the puff pastry didn't puff and left a pool of oil on top (same as what some one else mentioned). I have taken to making my own pastry. Maggie Beer has a nice and easy recipe for gluten-free pastry (just google gluten free pastry Maggie Beer). It crisps up nicely.

How are you toasting the Genius bread? I have found that if I defrost the seeded bread in the microwave first then put it under the grill, it gets all dried out like a rusk and is terrible! However, I don't have this problem if I put it in our toaster while frozen and use the defrost mode. Perhaps toasting it from frozen locks in some moisture.

I haven't tried any of the Helgas gluten-free bread but am interested in checking it out.

Thank you for the Maggie Beer pastry recommendation. :)

---

Has anyone seen any of the Simply Wize Deli Wafers (Poppyseed & Sea Salt) in any Coles supermarkets? It's been a number of months now and I suspect they have been pushed out to make way for the Coles gluten-free range. Shame, as in my opinion they are one of the few cracker/wafer choices that do good cheese justice and I haven't seen anything similar. Woolworths don't appear to stock them.

Does anyone have any suggestions for a suitable replacement? I'm looking for something that isn't a salty 'jatz' or rice cracker type product. Those are good for dips or sharp cheddars that can take the stronger flavour profile and bigger hit of salt, but they seem to overwhelm soft cheeses.

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These look similar to the Simply wize ones. http://www.melindasgfg.com/index.php/products/crackers/

Maybe have a look in some deli type grocery stores, I have sometimes seen gluten-free wafer type crackers in those.

Thanks Saz. :)

--

Regarding the Genius bread, I realised that I had been accidently grilling it using the pilot setting. Any bread + low temps = rusks. LOL. I didn't have the problem today when I used the proper setting on the oven.

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Coles are selling little tubs of sweets things like Rum balls as part of their Christmas range and a lot of them are marked gluten-free.  They are been sold in same section as Christmas puddings etc. They aren't part of the simply range , the packs have red stickers and it says gluten free on them. Might be handy for friends/relatives - they might not feel as scared if they don't have to venture to the health section- Just make sure they know to get one marked gluten free as one or two of the tubs aren't.

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I picked up a pack of 2 Macro Christmas puddings from Woolies.  Good to see the Christmas range expanding :)

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Woolies seem to have decided they want to get in on fresh gluten-free bakery thing like Coles. Purchased a pack of two lemon muffins tonight. Can't believe all these that there was nothing and now most majors have decided to introduce the ranges within weeks.

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I tried the Helga's Red Quinoa & Sunflower bread today. I liked it. It has the potential to be used untoasted for sandwiches when fresh (if feeling a little stale or dry to the touch, sprinkle a few drops of water on the bread, wrap with paper towel and microwave for 5 seconds), though perhaps isn't quite as soft untoasted as Country Life's multigrain bread. This is purely my opinion of course, I know some people hate gluten free bread 'raw'. ;-)

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Does anyone know where I can  gluten-free  version of jaffas? I'm sure last year  I found a generic brand in one of the supermarkets but can't find any generic versions this year. It's sort of tradition at home to have jaffas and mint leaves on the table on Christmas Day and don't want to miss out!

 

Was kinda disappointed this year to see that big bag of party mix coles put out for Christmas wasn't gluten-free. I've bought it other years and everyone loved them. Anyone seen big bags of gluten-free party mix? I don't want to have my own separate stash on the day- tried that one year and everyone forgot why mine separate and started eating them. Then they couldn't understand why I was getting cranky. It's allright for them, they can eat the others!

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Does anyone know where I can find a gluten-free version of jaffas? I'm sure last year I found a generic brand in one of the supermarkets but can't find any generic versions this year. It's sort of tradition at home to have jaffas and mint leaves on the table on Christmas Day and don't want to miss out!

Was kinda disappointed this year to see that big bag of party mix coles put out for Christmas wasn't gluten-free. I've bought it other years and everyone loved them. Anyone seen big bags of gluten-free party mix? I don't want to have my own separate stash on the day- tried that one year and everyone forgot why mine separate and started eating them. Then they couldn't understand why I was getting cranky. It's allright for them, they can eat the others!

Would this be suitable, Saz? http://www.absolutelyglutenfree.com.au/agfshop/chocorangeballs.html

I've never ordered anything from this company so I can't vouch for them, they just came up in a google search. They may do a party mix too, I haven't checked -- their list of confectionary products is extraordinarily extensive!

I know the feeling. Many has been the time when I or someone else has gone to the effort of making or buying some lovely gluten free dips, setting them aside completely separate to everything else with rice crackers and veggies, only to have the gluten hordes descend with their massive chunks of bread, contaminating everything. ARGH.

One time when I wasn't particilarly upset about it, the phrase "well, there goes the neighbourhood" came to mind and cracked me up, LOL. I can't see the humour in it though when there's precious little else to eat and/or they've ruined something special that I was really looking forward to eating -- especially when I haven't even had a chance to try it!!!! Ok, end rant. ;-)

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Hi group,

Been MIA for a bit. Welcome to the new people. Hello to every one else.

Can I ask what multi vitamin you all use. I recently found out Swisse has discontinued their gluten free womens multi. Pretty disappointed! The chemist tried to tell me the normal multi is gluten-free but reading the ingredients it contains gluten from muesli.

Hi Addison,

I noticed that no one had replied to your question!

I take this multi-vitamin: http://www.blackmores.com.sg/products/women-s-vitality-multi

No gluten as far as I can tell? (Please tell me if it does!).

Be careful with other vitamins in the Blackmores range. They seem to all say "no added gluten", but I saw one that had triticale in it.

I take some other supplements too if you'd like the details.

Hope this helps!

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Thanks Sammy. They look perfect but unfortunately not able to online delivery. Will be organised for next year work something out. I think I've found a ok party mix in Woolies.

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In case anyone else enjoyed them I found the Coles brand quinoa cups  the other day. Hope this means they are going to start selling them again, they are probably my favourite thing from their own brand range.  They are so handy for lunches at work.  What does everyone else take for lunch?  Been struggling with this a bit lately. I have a fridge and microwave at work but no shops close by.

 

Also any tips for what to take on a plane? Heading to the UK next week, doing it in two legs this time rather than three. This means a 14 hour flight from Singapore to London. I'm slightly terrified that even though I stated at the time of booking and will confirm a few days before I travel about my gluten-free needs, that my meal will be forgotten/not loaded ( I dreamed this happening). I was thinking of packing sesame snaps, vege chips, corn crunch and some of those little packs of roasted broad beans or chickpeas.

 

The other times I've flown I've done it in three legs of seven or eight hours each, so never been to concerned about a meal not getting loaded for one of them. Did have a bit of a mix up last time between Singapore and home but it was only 8 hours and they were able to find me a small amount of fruit. I'm not a big eater but not sure I could survive fourteen hours on fruit.

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Hubby saw the quinoa cups at my Coles the other day too! He brought home a pack of the Moroccan quinoa & brown rice to try as well as the plain quinoa cups.

I was wondering what dark chocolate you guys use? Lindt dark chocolate has no gluten containing ingredients on the label, but the website says they have shared lines. This confuses me as I thought foods sold in Australia had to declare any possible allergens? It's for a nice dessert so I'm after proper chocolate as opposed to something with fake sugar like Sweet William.

Lunch ideas:

- Leftovers from dinner. We always make extra and freeze in individual containers to take to work.

- Cook up a big batch of soup and freeze in individual tubs

- Salad: cook up a batch of quinoa in chicken or vegetable stock, put in a container with whatever salad ingredients and protein source you want. I later it with the soggy ingredients like tomatoes in the bottom of the container and leafy greens on top so they stay crisp, and I put a splash of vinegar or lemon juice and oil into a little deco-brand tub from the supermarket which is for sauces and dressings (holds about 20-30ml I think). Can also make with brown rice.

- Sandwiches on gluten-free bread that doesn't fall apart (e.g. genius, country life) if don't mind it raw. I haven't found a gluten-free wrap that would travel well but you could take one of those if you have!

- Salmon or Tuna rissoles made with potato and/or gluten-free breadcrumbs and a side salad. These freeze well too. The rissoles, that is. I'm shuddering at the thought of defrosted salad.

- Frittata, either sliced or in individual 'muffins' w/ salad

- Up to you if you want to take the risk, but you can get toaster bags to pop gluten-free bread in to make toast or toasted sandwiches in a shared gluten trap... I mean toaster. The Sunnybrook online store sells them but their shipping is ridiculous so you'd want to stock up on other supplies at the same time! These would also be ideal for your trip.

- There's stacks of recipes and ideas on this blog from an Aussie mum: http://glutenfreeforlunchboxes.wordpress.com

- a small tub of cottage cheese and gluten-free crackers or rice cakes, can also put sliced tomato in a separate container, assemble it all together at lunch time.

- Anything you'd normally eat for snacks that can be combined to make a meal.

When I travel I take a stack of Carman's gluten-free nut and gluten-free muesli bars, gluten-free cereal/muesli, and those little 30g boxes of nuts and trail mix (Lucky, Sunbeam), fruit and fruit purée tubs. You could also take an unopened pack of rice cakes and little portions of peanut butter, honey or jam, or some gluten-free protein bars. You want to make sure you have some protein and/or fat, not just carbs, as they won't be sustaining. You can take perishable stuff to eat earlier on, too.

I also pack a little material esky and a couple of freezer blocks (dry of course). The first thing we do when we arrive is go to a supermarket and get supplies of things like cheese, yoghurt, packaged deli meat, gluten-free bread rolls if gettable (since a whole loaf will go stale before you eat it!), small UHT milk containers, salad ingredients for rolls e.g. lettuce/baby spinach, tomatoes, fresh and packaged fruit, canned gluten-free baked beans and salmon, plastic sandwich bags and some plastic cutlery, paper plates & serviettes or paper towel both for eating/making meals on the go or in accommodation where you can't get proper plates and cutlery. If staying in any self-contained places we'll buy a 6-pack of eggs to hard boil and some chicken to cook too.

Yep, we kind of end up with a veritable supermarket in our bags/hire car!

Oh and we also look for gluten-free places to eat before we reach a destination to avoid being stuck in a situation where all I can have is a snacks for dinner! Coeliac society websites are good for this. They should also be able to tell you the location of healthfood stores.

I haven't travelled overseas while gluten-free but this is what we did when traveling around Tasmania including into places where there aren't any supermarkets and few establishments where you can get reliable gluten-free meals.

Wow, that was an essay, but a helpful one I hope!

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Snap decision to travel to Perth! Is anyone here from Perth or traveled there recently? I am after some recommendations for places to eat that offer gluten-free food and preferably also understand gluten-free meal preparation. I am very inexperienced with asking about the preparation side of things, especially on the spot. The Coeliac WA website has surprisingly few listings?!

We are based in Busselton for a couple of days exploring the Margaret River region, then are off to Scarborough for a week. Particularly interested in somewhere for lunch on our way to Busselton from the airport. We land at 10am but it'll feel like 12.

We have a kitchenette at Scarborough so that will make things easier.

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Hi. We are in Perth, but sadly don't have much in the way of restaurant recommendations. Grocery stores can close early around here, so keep that in mind in your planning. There are restaurants that can accommodate, and we have stumbled across them. But more often than not, we tend to go to the shops for food we prepare. Restaurants that have worked for us are sushi, Thai and ones that can speak to their menus if things are safe. We just go in and ask. Not the greatest for travel planning, but grocery stores are the backup (but again, not good for evening planning).

I think Bunbury grocery stores closed earlier than we had expected, but we managed to find a Thai restaurant (the wait was a bit painful though). There is a Mexican food place in Busselton, but they require reservations. We have never managed to eat there yet, so cannot speak to their gluten free protocols. Scarborough should be easy. We joined The Coeliac WA group when we first arrived, and they included a hard copy listing of restaurants that could accommodate around the state. If you are a Coeliac society member in another state, perhaps they would share it with you. I have no idea where our old list is. We also use Urbanspoon to look up gluten free dining around Perth. And calling restaurants before hand has worked out very well for us too. I think every grocery store that I have been to here has gluten free options, even small stores in smaller towns.

At least twice we have eaten at Goose restaurant at Busselton jetty. It doesn't rank well on Urbanspoon, but we were very pleased with our meals, and the setting is amazing. The prices were a bit higher that ideal, but the setting more than made up for it. We just spoke with staff to ensure that our meals were safe. We tried Broadwater Beach Bar and Restaurant in Busselton area, but they did not have safe French fries (even though they are gluten free friendly) so we left without eating. We feed a family of five gluten free, and they seemed more aligned with accommodating the single person eating with a bunch of gluten eaters than truly servicing gluten free eating. My kids value French fries very much!

Nandos are around, but our family has mixed views on its safety. Mad mex is a fast food Mexican styled place that has worked for us. In Subiaco we ate at the Witch's Cauldron once with success (not a lot of options, but the offerings were splendid). The Walk Cafe was another Subiaco restaurant that we enjoyed, and they had safe, delicious French fries! There is a big Coles in Scarborough for shopping. I haven't been in there, but Coles always seems to have decent gluten free options. If you end up at Hilary's Harbor, we have only found the sushi place and Mad Mex as options there for gluten free meals.

Having said all of that, many people here are familiar with celiac and gluten issues. We have been very happy with our food choices here. If you venture out to farmers markets there are some nice options there too! Sunday morning has a weekly farmers market at Stirling, and last were there, they had a wholly crepes vendor that specialized in gluten free offerings. We haven't eaten there, but only because we were off dairy at the time. They look amazing, and Stirling Farmers Market has a Facebook page if you are interested. We get amazing, authentic Mexican food from a vendor at the Poynter Farmers Market held fortnightly. Hope that helps.

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Have unfortunately returned from my trip.

 

The food on the plane was fine. On the way over (British airways) it really didn't taste that good. I don't think it was because it was gluten-free, every ones looked fairly average. 

 

So on to eating in England.

 

Supermarkets

The supermarkets in England have a lot more ready to eat meals than we do here. Some of the salads are fine but found less suitable than previous trips as the trend at the moment seems to be to put cous cous or pasta in them.

Marks and Spencer offer a gluten free sandwich in choice of either ham salad or cheese and pickle ploughmans. Not every store has them but most do. Have a good look though as they seem to put them in the vegetarian section. They also sell packets of crisps, none of which are marked gluten-free but read the ingredients on the back. Another thing I like about them is the pick n mix cheese.

 

Be warned: Marks and Spencers branded cola has barley in it. I didn't think to check and after a few sips, just happened to look at the label and notice barley clearly on the label. Possibly best to check all softdrink, I remember on another trip seeing a softdrink with barley as ingredient . I didn't take much notice at the time as had never seen it before and was other flavours in the drink I wouldn't like even without the barley.

 

Eating out

Gourmet Burger Kitchen (gbk)- This place is a bit like Grill'd. They have a separate gluten free menu, which you need to ask for. The gluten-free menu is fairly new so not all places advertise they have one, but I was told all stores have it. When you get the menu it lists all the gluten-free burgers, snacks and drinks so you don't have to worry about sauces etc. The staff in the Soho one are very good, one time the exact brand of drink on the menu was different to one on the menu and the server checked it was ok for me. The chips at gbk are gluten-free but they don't list them on the menu as they are fried in the same oil as gluten stuff.

 

Pizza Express- Fantastic gluten free pizza.  Most of their pizzas can be made gluten-free. All pizzas are tossed in gluten-free flour in the kitchen to reduce cc. Gluten free pizzas are served on their own board, that they don't serve the normal ones on. The bases are lovely and soft - the first time I had to check I got the right one. The best bit was when I did ask the waitress didn't roll her eyes and just assured me it was.

Just be careful of the desserts, they had a crumble dessert marked as gluten-free but the top contained oats. Remember that in England you can buy gluten-free oats, so by UK standards it is gluten-free. I've never been that sensitive and really wanted to try it but decided against it.

 

There is a place in Leicester square called Pompidou. It's just a little café and most of their food won't be gluten-free but they do jacket potatoes. When I ordered I checked if they coat them in flour and explained I was asking because I have allergies. The server asked if it was gluten and then assured me there was no gluten in the potato dish.

 

Honest Burger- This place is so popular that they take names and numbers and call you when they have room (at least the soho one).

I was bit unsure at first as they just list the types of burgers they have and say they can do gluten-free buns. So when I went to order I asked about the sauces etc- expecting that what I was going to end up with was meat and salad on a dry bun. Imagine my surprise when they server said everything was gluten-free- except for one burger which was temporary special.  The burgers come with chips. It was all really tasty.

 

As far eating out goes- finding gluten-free listed on a menu seems to be less common than here but they seem to be more aware of cc. I noticed a lot of places will have a note saying they can cater to allergies- I avoid them if I can simply because I find that it usually means garden salad. Having said this- at no point have I gone hungry.

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Day 2 of our Perth trip and I have already been glutened at a winery lunch despite several assurances by staff. Had to miss out on the later tastings when the stabbing pains kicked in. Still feel like %#$&@. UGH.

Have had good experiences elsewhere though. At Voyager Estate they put together a gluten free tasting plate for us which was delish. It's not listed on their menu but was no problem at all, even with their kitchen busy preparing for a wedding. One of the staff has a celiac husband and treated me to an extra portion of their gluten-free bread. I would thoroughly recommend Voyager Estate.

Good to hear of your travels, Saz!

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A few more places

Snowflake - a gelato place in Soho. I was told by one staff member that they have some gluten free cones but I just had it in a cup. Most of the gelatos on the day I went were gluten-free but not sure if they change the flavours each day.  The staff knew which were gluten-free

.

There is a boost juice on Oxford st- There are also a few others around Uk, although not everywhere like here.

 

Café Nero do some gluten-free soups.

 

Polenteria- This is in Soho, basically they do dishes where the main part is polenta.  The dish I got was like a pile of polenta mash with chicken, tomato and olives.

 

Mcdonalds sometimes do potato wedges which are gluten-free.

 

Wahaca - is a Mexican chain. They have a separate gluten-free menu. Although there is not as much on at you would think from a Mexican place, I was a bit disappointed that some of the tacos weren't ok. I guess due the sauces. Still plenty of options.

 

Waggamamma- Much like here, they can do gluten-free but it mostly means plain noodles and veg. There is one dish with a chilli sauce that requires little modification. ( I think it is chilli men but check)

 

 

 

 

Avoid the Angus/Aberdeen steak houses- I think it's rip off anyway but your options are the steak without any sauce and very limited choice of sides. You will pay around $40 for a piece of steak and potato.

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What hot cross buns has everyone been eating? I've had the purebred ones. The only other ones I've seen are the Woolworths own brand ones, but I picked up a pack and felt like it weighed a ton. Experience tells me heavy baked gluten-free stuff is usually horrid, but interested if anyone has tried them?

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I suggest anyone.who has any frozen weiggt watchers meals in their freezer to check ingredients. I boughtthe satay one for lunch only to discover it has wheat in it now. Somehow in the coconut. I have no other food and no shop near so I just had to scrap out the rice, rinse.under the tap and.eat it. Lucky not that sensitive.

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What hot cross buns has everyone been eating? I've had the purebred ones. The only other ones I've seen are the Woolworths own brand ones, but I picked up a pack and felt like it weighed a ton. Experience tells me heavy baked gluten-free stuff is usually horrid, but interested if anyone has tried them?

Nope, didn't even see them?! I had some Purebred ones.

I spoke to a rep from Genius gluten-free a couple of weeks ago. They are bringing out puff pastry that the rep says actually puffs! And, joy of joys, CRUMPETS! (I'm still trying to find a good crumpet replacement). They are bringing out some other pastry items too.

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Nope, didn't even see them?! I had some Purebred ones.

I spoke to a rep from Genius gluten-free a couple of weeks ago. They are bringing out puff pastry that the rep says actually puffs! And, joy of joys, CRUMPETS! (I'm still trying to find a good crumpet replacement). They are bringing out some other pastry items too.

 

OHH! I hope they are proper crumpety. I sometimes buy the livwell ones, they are nice but don't taste like crumpets. I had the purebred hot cross buns as well. They have just bought out English muffins and mini pikelets. I tried the muffins- I prefer them to the livewell. Both are nice, just not really like English muffins- but I'm starting to think they might one of those things that just never gets close.

Genius is my favourite brand as far as taste goes, however their quality control needs major improvement. Sometimes the pan au choc pastries are little and pale and other times large and golden. I also find the bread sometimes has lots of holes in it. They always taste great and because of that I am happier to pay that bit more than for other brands but it's a bit annoying when I can't make sandwiches.

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OHH! I hope they are proper crumpety. I sometimes buy the livwell ones, they are nice but don't taste like crumpets. I had the purebred hot cross buns as well. They have just bought out English muffins and mini pikelets. I tried the muffins- I prefer them to the livewell. Both are nice, just not really like English muffins- but I'm starting to think they might one of those things that just never gets close.

Genius is my favourite brand as far as taste goes, however their quality control needs major improvement. Sometimes the pan au choc pastries are little and pale and other times large and golden. I also find the bread sometimes has lots of holes in it. They always taste great and because of that I am happier to pay that bit more than for other brands but it's a bit annoying when I can't make sandwiches.

Yeah, I found the Livwell crumpets disappointing. I was a crumpet afficionado pre-gluten-free.

It's funny you should mention Genius' quality control - the reason why I was speaking with the rep was because one of the seeded loaves I had bought did not have any seeds!!

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    • Positive biopsy and blood work?  It sure sounds like your doctor made the right diagnosis.   Let me tell you my story.  Diagnosed after going for a routine colonoscopy because I am over 50.  GI saw my chart and noted that I was anemic.  I have a genetic anemia and I was iron deficient as well.  I lived like that my entire life.  But my wise GI ordered a celiac blood panel and it was considered mildly positive.  So, he ordered an endoscopy to my colonoscopy.   I had been dairy free since I was young.  Was told that I had an allergy.  I had not any GI issues with gluten.   I was an avid baker.  I had nut issues and also mushroom, garlic/onion, and egg intolerances.  I had some pretty severe allergies to medications (anaphylactic) and some seasonal allergies along cats and horses.   I was shocked.  My husband had been gluten free for 12 years prior to my diagnosis.  There is no way both of us would have gluten issues.  But...the tests did not lie.  My iron deficiency anemia resolved within months of my going gluten free.  Two months into the diagnosis, I fractured my back doing NOTHING!  I have osteoporosis as a results of having celiac disease.   Grief is completely understandable.  Denial is a part of grieving.  But the proof will be in follow-up blood tests and how you feel.   So, now I can eat nuts (not almonds), eggs (two a day every single)  and dairy.  Yes, ice cream!  I have yet to get back garlic and mushrooms, but I can live with that.   I have Hashimoto’s too.  .  Once you have one autoimmune disorder, you can develop more.  The gluten-free diet may help, not only your celiac disease, but your UC issues as well.   Try the diet.  I think you will be pleasantly surprised!  
    • Hi Sofie! Listen to KarenG.   We both had iron deficiency anemia when we were diagnosed.  Plus, I have Thalassemia which is a genetic anemia on top of the iron deficiency anemia.   Dumping iron into your system is not the solution.  You need to be seriously gluten free.  You are probably unknowingly damaging other parts of your body....like your bones.  Two months after my diagnosis, I fractured my back doing NOTHING!  Think you are just not getting enough oxygen to your brain?  Think again!  It is probably related to celiac disease.  Celiac disease is systemic.  It is not just about villi damage.   But why am I telling a college student this?   You should be researching your autoimmune illness and ensuring that you do not develop Cancer (rare) or another autoimmune disorder like lupus, diabetes, thyroiditis, MS, Crohn’s, or one of the almost 100 other Autoimmune disorders (common).    Get your antibodies down.  Your mild anemia is the least of your problems.  Raising  your ferritin level may help a little, but healing from celiac disease will help you a lot more!    
    • Let my start by giving a brief summary of what I’ve been diagnosed with. Just over the past year I’ve been diagnosed with Celiac, EOE, lactose intolerance, soy allergy, tree nut allergy. Most recently diagnosed with Ulcerative Colitis. The Colitis came 8 months after having found out I had celiac. I have never had problems with gluten in my life. Dairy was something I had to eliminate because of the excrutiating stomach pains I would get from it. But I can have gluten any day and not have a problem.  I was diagnosed with a biopsy and followed by bloodwork. But who’s to say that dairy wasn’t the cause? I just feel like the GI was very quick to jump on the diagnoses without fully understanding my medical history, prescriptions I’ve took in the past ie long term antibiotic use, accutance, and 7 years of constant NSAID use.
    • I think she wants you to be strictly gluten free and heal.  Not give you things to patch up the damage you are causing by not getting your antibodies down and healing.   I am sure  she expected that you would take your diagnosis seriously and eat gluten-free.  4 months after your diagnosis, your antibodies would have gone down better.  But you weren't eating gluten free.  Eat gluten free. Take your supplements.  Read about the correct way to get your iron up - B12, vitamin C, don't take with calcium foods, etc  
    • Hello! I'm hoping to get some advice from y'all about iron IV infusions. First, some background: I was diagnosed with celiac disease at the beginning of June this year (2017).  I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free.  At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc.  I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months.  I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed. I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions: 1. Do you think iron IV infusions in the near future would be a reasonable treatment for me? 2. Do you have any advice on how to make them happen? And if you have any other advice that's relevant to my situation, I'd love to hear it!   Thanks so much, Sofie
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