Any Advice - Highly Appreciated!

[Sam101]

Hey guys, 

Hope everyone is staying well through these tough times.

As the title says - any advice is highly appreciated!! 

Bit about me - Age - 30   Gender - Male

                        Height - 165cm (5 foot 5)

                        Weight - 48kg (105lb) - Yes thats right!!  Huge weight loss, normal weight before Celiac 5 years ago - 65kg (143lb),

                        Health conditions - Food allergies (egg, nuts, peas, lentils and some medication. + lactose intolerant + asthma. 

As you can see I have lost a huge amount of weight in the last 5 years and now underweight (my ribs are showing). I was 52kg (110lb) for 2 of those years then dropped further. At this point I got alot of scans done e.g. Ultrasound, CT scan, blood tests, MRI, colonoscopy, refused gastroscopy (intense phobia of choking/things other than food going down my throat). All came back negative even blood test for celiac. 

Doctors attributed HUGE weight loss due to stress (lol), I wasn't/not that stressed until now, and I have been eating around 2000 calories a day. Appetite isn't an issue for me. During this time I have noticed even with a negative blood test you can still have celiac and also when eating gluten containing foods I get diarrhea, skin rashes etc and do not get these symptoms when eating non-gluten foods.

Due to my allergies etc, I have mainly been eating rice+fruit+chicken everyday which is extremely difficult, especially without sauce etc. and I often slip up and eat gluten containing food.  At this point I am unsure what to do and definitely too phobic to get a gastroscopy done to confirm celiac. If i lose any more weight I will look/be very ill and maybe even admitted to hospital.

Any advice is highly appreciated!!!!

Thanks Guys 

[GFinDC]

Hi Sam101,

Do you which blood test you had?  Often doctors will do only the ttg IgA test initially.  Some people don't make IgA type antibodies so they always fail to show up on those IgA tests.  There are several other antibody tests that can be done like DGP IgG and EMA.

[trents]

In addition to what GFinDC said, if your celiac blood tests were done at a time when you had been attempting to eat gluten free, that would sabotage the results.

Concerning your phobia of things going down your throat preventing you from having a endoscopy with biopsy, just request sedation. The endoscopy/biopsy is considered to be the gold standard of diagnosing celiac disease and also of differentiating it from non celiac gluten sensitivity since the symptoms of those to gluten-related conditions are very similar.

[Wheatwacked]

Read the posts by KnittyKitty and Posterboy.

You may be Non Celiac Wheat Sensitive in which case no amount of testing will confirm. I'm with you about the gastroscopy. True that negative outcomes are statistically <1% but so was my chance of being Celiac, yet here i am. Go with your gut feeling. If you focus on increasing potassium in your diet you will simultaneously increase your other vitamins and minerals.

"Thiamine deficiency occurs where the diet consists mainly of milled white cereals, including polished rice, and wheat flour, all very poor sources of thiamine. Thiamine deficiency can develop within 2-3 months of a deficient intake and can cause disability and death... In the northern and north eastern parts of Thailand, thiamine deficiency, confirmed biochemically, was reported to be common in spite of adequate but marginal thiamine intakes, with the daily food consumption of the people being large amounts of glutinous rice, raw fermented fish and vegetables."  https://www.who.int/nutrition/publications/en/thiamine_in_emergencies_eng.pdf

Here is the list of vitamins I took all of last year based on the RDA's and what I was consistantly not getting in my diet. I recently switched to 840 mg of Phosphatidyl Choline and 1 or2 ounces of Grape flavored Magnesium Citrate in 10 ounces of water. The mag citrate in the list was a typo. It was actually mag oxide and did not help. Also stopped the calcium because I started to drink several glasses of 100% grassfed milk.

 

 

[Sam101]

Hey all, 

Thankyou for the replies, much appreciated.

I am not sure what blood test I had, it just said celiac, and yes I was eating a gluten diet during it, as I knew if i stopped it wouldn't show up. Can you recommend all the blood tests I need to have to test for celiac? 

In response to 'trents', sorry it is an extreme phobia and I just won't get it done no matter what. So I  the blood test is my only option. 

At this point I am really worried as I am only 48kg (105lb) at 5'5 (165cm) - male, and I am really unsure what to do here? Should I request steroids from my doctor? I doubt they will ever give it to me since I havent even been diagnosed.

At present I am trying hard to eat gluten free, but I am slipping up quite often so its difficult, I am really unsure how to approach this situation.

Thanks guys!

[trents]

Concerning tests that can be run to detect celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ But be aware that any test for celiac disease would require you to be consuming significant gluten (the equivalent of two slices of wheat bread daily) for weeks before testing. This is true both for the blood tests and for the endoscopy/biopsy.

You wrote: "At present I am trying hard to eat gluten free, but I am slipping up quite often so its difficult." Why are you slipping? Do you lose your resolve and give into temptation or is it because of lack of knowledge as to where gluten is hidden in foods?

 

Edited June 5, 2021 by trents

[Sam101]

11 hours ago, trents said:

Concerning tests that can be run to detect celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ But be aware that any test for celiac disease would require you to be consuming significant gluten (the equivalent of two slices of wheat bread daily) for weeks before testing. This is true both for the blood tests and for the endoscopy/biopsy.

You wrote: "At present I am trying hard to eat gluten free, but I am slipping up quite often so its difficult." Why are you slipping? Do you lose your resolve and give into temptation or is it because of lack of knowledge as to where gluten is hidden in foods?

 

Hi Trents, mainly slipping because im finding it very difficult to eat the same foods everyday i.e. rice, chicken and fruit, it gets extremely hard. As you can see above I have allergies so stuff like nuts, eggs are not an option. Also I hear that cross contamination is common even in labelled 'gluten free foods', so I am avoiding them even e.g. even all sauces, so its very difficult to eat plain rice and plain chicken every single meal every single day..... I even tried Quaker gluten free oats, but got symptoms straight away. My aim at present is to first increase my weight as I am dangerously underweight and then test foods labelled 'gluten free'. 

I didn't know you had to eat gluten even for endoscopy?? so basically if i lose more weight and get admitted to the hospital and they do all the tests since I am eating gluten free and assuming this is celiac disease, all tests will turn out fine? and they will think im anneroxic? lol? then what do I exactly do?

 

 

[Wheatwacked]

On 6/4/2021 at 4:02 PM, Sam101 said:

when eating gluten containing foods I get diarrhea, skin rashes etc and do not get these symptoms when eating non-gluten foods.

That is pretty much it's own answer. Either Celiac Disease or Non Celiac Wheat Sensitivity. 

On 6/4/2021 at 4:02 PM, Sam101 said:

I have been eating around 2000 calories a day. Appetite isn't an issue for me...

12 minutes ago, Sam101 said:

I am dangerously underweight

 

Ribs are good. Eat as much as you want, just not wheat, barley or rye or any of your allergies. 105 pounds is at the low end but underweight is better than overweight. I was released from the Vietnam draft because until I was 18' I was always >10% less than the minimum. It does bring up the image of the skinny kid on the beach getting sand kicked in his face and losing the girl, but not to worry, they'll all be on insulin and heart attacks some day.

The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free - Celiac.com

"In individuals with symptoms who have not had a biopsy to diagnose celiac disease, but have been on the gluten-free diet for a significant period of time, the gene test is often the only way to determine if symptoms could possibly be related to celiac disease. For a person who faces this situation, a negative gene test would indicate that symptoms are not the result of celiac disease. A positive gene test, however, does not diagnose the disease but increases the likelihood that it is present." https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets4_GeneticTesting_R11.pdf

[trents]

39 minutes ago, Sam101 said:

Hi Trents, mainly slipping because im finding it very difficult to eat the same foods everyday i.e. rice, chicken and fruit, it gets extremely hard. As you can see above I have allergies so stuff like nuts, eggs are not an option. Also I hear that cross contamination is common even in labelled 'gluten free foods', so I am avoiding them even e.g. even all sauces, so its very difficult to eat plain rice and plain chicken every single meal every single day..... I even tried Quaker gluten free oats, but got symptoms straight away. My aim at present is to first increase my weight as I am dangerously underweight and then test foods labelled 'gluten free'. 

I didn't know you had to eat gluten even for endoscopy?? so basically if i lose more weight and get admitted to the hospital and they do all the tests since I am eating gluten free and assuming this is celiac disease, all tests will turn out fine? and they will think im anneroxic? lol? then what do I exactly do?

 

 

The official guidelines for the gluten challenge before an endoscopy/biopsy is at least two weeks of consuming the equivalent of two slices of wheat bread daily. It is a shorter challenge period than for the blood work, which is 6-8 weeks.

[GF-Cate]

On 6/4/2021 at 4:02 PM, Sam101 said:

All came back negative even blood test for celiac. 

During this time I have noticed even with a negative blood test you can still have celiac and also when eating gluten containing foods I get diarrhea, skin rashes etc and do not get these symptoms when eating non-gluten foods.

Hi Sam,

If you haven't yet had the gene test for celiac, I would start there. You do not need to be eating gluten for the gene test. It is a very simple cheek swab, and you can order it yourself (or your doctor can order it- in that case I think it is often done via blood sample).

https://targeted-genomics.com/

If you have celiac genes (which still doesn't necessarily mean you have developed celiac, though with the genes you could at any point in your life) and you don't feel like you can go back to eating gluten to have the blood work done, then the next step would be to adopt a truly gluten free lifestyle to eliminate reactions (you mentioned diarrhea & skin rashes), work to heal gut damage and any nutritional deficiencies, and for your body to be able to use & process the calories and nutrients you're eating (right now it sounds like it's not). Even if you don't have celiac, you can have non-celiac gluten sensitivity (NCGS) which requires the same gluten free lifestyle.

If your rash is actually dermatitis herpetiformis, you can have skin samples biopsied and be diagnosed with celiac disease that way.

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

This is a link describes the various tests for celiac:

https://nationalceliac.org/wp-content/uploads/2019/11/Celiac-Tests-copy.pdf

On 6/4/2021 at 4:02 PM, Sam101 said:

 

                        Health conditions - Food allergies (egg, nuts, peas, lentils and some medication. + lactose intolerant + asthma. 

Even with your food allergies, there are tons of healthy foods you can eat. Is there a particular reason you're mainly eating chicken, rice & fruit (are those the only things agreeing with your stomach right now)? Certainly adding additional proteins - beef, pork, fish, shrimp, etc. - even things like duck, rabbit, venison (if you like them, or can learn to like them). Cooking in an instapot or crockpot can make the prep easier. The internet has a wealth of recipes; YouTube is great for cooking instructionals too. Soups from scratch can be relatively quick and easy to make, and you can add veggies and protein to your liking (make extra and batch freeze for ready made meals - I almost always make an extra serving of what I'm cooking and freeze for a future meal).

Add more healthy fats - avocado, olive oil in a homemade dressing, seeds such as hemp, flax and chia (quick and easy to make into a breakfast pudding by adding a "milk" like hemp or coconut or one you can have).

Roasting sheet pans of vegetables is another easy way to batch prepare - sweet potatoes, white potatoes, parsnips, zucchini, mushrooms, cauliflower, carrots, broccoli, fennel, kale - many vegetables taste great roasted with a light drizzle of oil and a little salt & pepper.

Those are just a few food ideas. Also some people use an eating plan like AIP (autoimmune paleo protocol) or primal or paleo for weeks or months (or longer) to get their digestion on track and identify any other possible triggers (tons of info & recipes online about all of these) and to focus on eating in a really nutrient-dense way as their bodies are healing.

You mentioned sauces - what kind of sauce are you missing? Most things should be pretty easy to make from scratch. Primal Kitchens is one company that makes a range of certified gluten free sauces (not sure if all are, but certainly many).

https://www.primalkitchen.com/collections/sauces

One of the big changes and learning curves for me was to have enough foods and choices available at home to make this lifestyle easier. And also to realize I had to dedicate more time than most to cooking. For me that means keeping the fridge/pantry stocked with plenty of staples for home cooking, batch cooking and freezing "ready to go" meals for when I am to tired or busy to cook. Also accepting that this is hard and not as fun or interesting as being able to go out to dinner on a whim, but that it is my "normal" now. Add to that learning new recipes and cooking things at home that I would have just gotten out before (for example, I make gluten-free batter fried fish on my stovetop the other week & it came out great!). But it still feels like a burden a lot of the time quite honestly.

17 hours ago, Sam101 said:

Also I hear that cross contamination is common even in labelled 'gluten free foods'

Sadly, this is true. In the US the labeling laws are such that the terminology "gluten free" is a misnomer, there can still be gluten in the product. In food products labeled "gluten free", the gluten content is supposed to be under 20ppm (parts per million). For many people (including me), this is not enough. The other issue is that there is not necessarily any verification of that. It is up to food manufacturers to figure that out (no required testing, etc.). Supposedly 20ppm is tolerated by many people. However, if you have 3 or 4 servings of various food products labeled "gluten free" in one day, you could be ingesting 60-80ppm of gluten and setting off an autoimmune reaction (if you have celiac).

If a food product is labeled "certified gluten free" it is under 10ppm and requires regular testing to earn the certification. There is also one certification that is 5ppm. 

https://nationalceliac.org/resources/gluten-free-recognition-seal-program/

Certainly in restaurants, I would use extreme caution with the terminology "gluten free". It is extremely difficult for most restaurants to actually serve gluten free food (I know some will disagree, but with the types of reactions I have to gluten, I can say that most restaurants that I have tried do not make the cut for me).