Really need some help/advice

[Sam100]

Hi everyone, 

I just found this forum and been looking through the topics and it looks really helpful. I am really confused and any help/advice is greatly appreciated. 

I am a 29 year old male, 5'5, 49kg/108lb, huge weight loss), and live in England. Health conditions - Food allergies (egg, nuts, peas, lentils and some medication. + lactose intolerant + asthma. 

My normal weight throughout my 20s is around 67kg (147lb). I first started losing weight in November 2015 and it has happened in stages:                            November 2015 - 67kg to 62kg,      August 2016 - 62kg to 57kg                  February 2017 - 57kg to 52kg                   September 2019 - 52kg to 50kg          March 2020 - 50kg to 49kg.                                                                                                                                                                                                                                                                                                                                                            

I attributed weight loss up until i was around 57kg to stress and not eating properly and then I knew something was wrong. I noticed I was also getting rashes on my legs. I then realised everytime I ate bread or other gluten containing products I would have diarrhea. I went to the doctor in early 2017 and he sent me for some tests including testing for celiac and vitamins etc and celiac came back negative. I have tried to adopt a gluten free diet which was and still is very difficult due to my other allergies also. I have also tried many gluten free products - Quaker oats and gluten free cornflakes where I get some diarrhea from them. I resumed eating gluten and was thinking of going back to the doctors after COVID-19 is over to get another celiac test done. 

At this point I am really confused and depressed and any help/advice is greatly appreciated.

Thanks guys!

Edited April 22, 2020 by Sam100

[Scott Adams]

If you get diarrhea reliably when you consume gluten, at the very least you likely have gluten sensitivity, which ~10% of people have. If your symptoms do go away when you stop eating gluten perhaps the issue is that your diet is not 100% gluten-free. Also, oats can be cross contaminated with wheat, and there are some people who have an intolerance to oats.

To be tested for celiac disease you would need to eat gluten, like crackers or a piece of bread, daily for at least 6 weeks. If you don't want to be tested again then consider making sure your diet is gluten-free, and I would eliminate oats and the other allergens for several weeks. Be sure to look for foods labelled "gluten-free," but it might be best to stick to whole foods that you prepare for a while.

[Sam100]

Hi Scott, thanks for the reply.

Yes I am back to eating gluten to get another test done. I am just confused why it came back negative the first time? And what can I do if it comes back negative again?

Thanks

[cyclinglady]

Maybe you did not get the entire celiac panel which includes not just the typical screening TTG (IgA, IgG) , but the DGP (IgA, IgG) and EMA [IgA) tests, along with an Immunoglobulin A (IgA) control test (this validates the celiac IgA tests).  I would hate for you to do a gluten challenge and not get all the tests.  Why?  I test positive to only the DGP IgA and I am biopsy-confirmed.  The TTG is good, but does not catch all celiacs.  

You are young.  You should also rule out Inflammatory Bowel Disease. 

[knitty kitty]

Celiac Disease causes malabsorption which results in malnutrition.  Skin rashes can be caused by vitamin deficiencies......

https://www.livestrong.com/article/269105-skin-rashes-caused-by-vitamin-deficiency/

....or by Dermatitis Herpetiformus, a blistering rash caused by Celiac Disease.  People with DH often do not test positive on blood tests for Celiac Disease.  

I have DH and did not test positive for Celiac on blood tests.  However, I carry two different genes for Celiac Disease.  You might consider getting a genetic test for the most common genes for Celiac Disease (HLA DBQ 2 or 8).  Be aware that not all genes for Celiac Disease have been identified.  You don't have to be on a gluten containing diet to do a genetic test and many gene tests can be done at home via postal service.

Discuss with your doctor or nutritionist about adopting the AutoImmune Protocol Diet (my favorite) or the Fasano diet (Cycling Lady's favorite), both of which promote gastrointestinal healing.  

Hope this helps!

 

[GFinDC]

20 hours ago, Sam100 said:

Hi everyone, 

I just found this forum and been looking through the topics and it looks really helpful. I am really confused and any help/advice is greatly appreciated. 

I am a 29 year old male, 5'5, 49kg/108lb, huge weight loss), and live in England. Health conditions - Food allergies (egg, nuts, peas, lentils and some medication. + lactose intolerant + asthma. 

My normal weight throughout my 20s is around 67kg (147lb). I first started losing weight in November 2015 and it has happened in stages:                            November 2015 - 67kg to 62kg,      August 2016 - 62kg to 57kg                  February 2017 - 57kg to 52kg                   September 2019 - 52kg to 50kg          March 2020 - 50kg to 49kg.                                                                                                                                                                                                                                                                                                                                                            

I attributed weight loss up until i was around 57kg to stress and not eating properly and then I knew something was wrong. I noticed I was also getting rashes on my legs. I then realised everytime I ate bread or other gluten containing products I would have diarrhea. I went to the doctor in early 2017 and he sent me for some tests including testing for celiac and vitamins etc and celiac came back negative. I have tried to adopt a gluten free diet which was and still is very difficult due to my other allergies also. I have also tried many gluten free products - Quaker oats and gluten free cornflakes where I get some diarrhea from them. I resumed eating gluten and was thinking of going back to the doctors after COVID-19 is over to get another celiac test done. 

At this point I am really confused and depressed and any help/advice is greatly appreciated.

Thanks guys!

If you have DH you may flunk the usual blood antibody testing.  People with DH deposit antibodies in the skin, so that's where they have to be tested.  They test for DH by taking a small skin biopsy from next to a lesion/blister.  DH is usually itchy and appears as symmetrical patterns on the body as in both elbows, both knees or other.

[Scott Adams]

This thread might be helpful to see images of DH:

 

[Sam100]

13 hours ago, Scott Adams said:

This thread might be helpful to see images of DH:

 

Wow, yea, this is very similar to my rash. It's raised white itchy bumps on the hands/fingers mainly. In addition, I get like cuts along the skin on my fingers. Thanks for mentioning that antibody tests do not show as positive for people who get DH. 

Thanks also for mentioning the Fasano diet, I have already started it. At first I was thinking to eat gluten and get tested again, but I am not sure if there would be any benefit of getting diagnosed a celiac? (I live in England). I was thinking I can maybe get some specialised gluten free food/supplements to help me in terms of ease and price, but to go back on a gluten diet is pretty frustrating. 

What are your guys thoughts?

Thanks!

 

 

 

[Scott Adams]

The only benefit of getting tested is if you would need a formal diagnosis....a piece of paper...that would make you adhere to a lifelong gluten-free diet. On the flip side once you get diagnosed, at least in the USA, you will be faced with lifelong higher private life and health insurance rates, and policies may be harder to get.

[cyclinglady]

For me, a formal diagnosis gave me the power to adhere to a life-long diet.  It also has insured excellent healthcare.  My doctors provide follow-up celiac disease care.  I do not worry about going to jail and not being able to get food.  

My husband went gluten-free 12 years before my diagnosis.  He will be the first to tell you that I have received more support from family, friends and medical.  He refuses to do a gluten challenge.  We know gluten makes him ill.  He has been faithfully gluten-free for 20 years.  What nut would do that?  

Do the research and determine what works best for you.  

[knitty kitty]

Sam,

I get DH on my hands, too.  (Also on elbows and knees.)  I learned DH is pressure sensitive.  I would go grocery shopping and have DH blisters on my palms from pushing the shopping cart by the time I got home.  Holding knitting needles ? or a pencil would cause blisters on my fingers.  Same reaction of skin under elastic! 

If you get a positive from a biopsy of your DH blisters, that is a definite diagnosis of Celiac Disease.  But the doctor needs to know what they're doing, like GFinDC said.  I went to a dermatologist who wasn't Celiac savvy and was misdiagnosed as having contact dermatitis.  I wiped off those shopping cart handles, wore gloves, covered the handle with my coat, still got DH blisters.  

Iodine in foods will cause DH blisters to form, too.  I avoid eggs, shellfish, iodized salt, and dairy products (I'm lactose and casein intolerant, too).  Recently, a multivitamin which included iodine made me break out, so be careful with supplements and medications.

The cuts along the skin on your fingers is something else I'm familiar with.  My skin would split on the tips of my fingers along the side of the nail bed and the skin would become very thick and hardened.  This, I learned, is due to a deficiency in Vitamin B3.  Vitamin B3 in the form of tryptophan will help alleviate anxiety and help you sleep.  Tryptophan and niacinamide are two forms of this vitamin that doesn't make you flush.  Niacin is the form of Vitamin B3 that will make you flush.  This is extremely unpleasant with DH! 

Celiac Disease damages the part of the intestines where most of your vitamins are absorbed.  celiac disease also causes a higher metabolic need for certain vitamins and minerals.  Do get checked for deficiencies. Subclinical deficiencies may exist that don't show up on those tests and supplementing can be beneficial.  Consult your doctor before supplementing.  I'm not a doctor, just learned all this the hard way.

I think doctors ordering a gluten challenge is ridiculous and malicious.  Bioethics says "first, do no harm."   A gluten challenge is harmful.  Celiacs with DH often have patchy, less severe damage to their intestines which doctors can easily miss or attribute to IBS.  I was misdiagnosed with IBS after my horrible gluten challenge.  Heavy sigh.  Most doctors have not lived this, so they don't know what it's like.  

Do not eat processed gluten free foods.  Don't gamble with eating at restaurants!  Stick to the Fasano diet (or the AutoImmune Protocol).  Prepare your own food.  

Best wishes for your journey!

 

 

6 hours ago, Sam100 said:

Wow, yea, this is very similar to my rash. It's raised white itchy bumps on the hands/fingers mainly. In addition, I get like cuts along the skin on my fingers. Thanks for mentioning that antibody tests do not show as positive for people who get DH. 

Thanks also for mentioning the Fasano diet, I have already started it. At first I was thinking to eat gluten and get tested again, but I am not sure if there would be any benefit of getting diagnosed a celiac? (I live in England). I was thinking I can maybe get some specialised gluten free food/supplements to help me in terms of ease and price, but to go back on a gluten diet is pretty frustrating. 

What are your guys thoughts?

Thanks!

 

 

 

 

[Sam100]

Thanks guys for your responses, much helpful and appreciated.

In regards to what Knitty kitty said, so  I am assuming celiacs who have DH are different to celiacs without DH? as in they are less affected? If the damage to the small intestine is much lower then how have I lost 18kg? (40lb) which is around 27% of my bodyweight making me underweight now? sounds pretty damaging.

Wow this is really tough, as I said in my first post - I have lived with several allergies all my life which were manageable and not that difficult to live with, but celiac is a whole other level of difficulty. 

I have started the Fasano diet and will continue for around 6 months and then try and incorporate other items such as potatoes i guess. 

I really hoped there was more that medical professionals could do such as providing gluten free food on prescription or supplements to get calories in easier...damn I am already stressed thinking about this and this huge weight loss is stressing me out severely. 

Thanks guys!

Edited April 24, 2020 by Sam100

[GFinDC]

Hi Sam100,

Gaining weight with celiac disease is dependent on good diet and getting the immune response under control.  The cleaner your diet is gluten-wise the better.  The immune system can be pretty stubborn when it comes to fighting off invaders.  It may take weeks or months for your immune system to settle down and your intestine to heal.  Every little bit of gluten kicks the immune response into high gear again.  So your Fasano diet should be a big help to prevent that.

I am hoping you start feeling better in just a few weeks.  Getting the gluten out of your diet is the big key to health for us.  Healing takes time but it does happen.

Edited April 24, 2020 by GFinDC

[knitty kitty]

Not less affected, just affected a different way, in the skin. Celiacs with DH can still have intestinal damage.  Most damage occurs where we absorb vitamins in the small intestine.  I dropped sixty pounds in a month and a half at one point and I had DH.  I had reached a point where my intestines were so damaged/dysfunctional it could not absorb enough nutrients so my body switched gears and began burning fat instead of absorbing and utilizing carbohydrates.  This is the basis of the AutoImmune Paleo Protocol diet.

You might find this article interesting.  It compares a gluten free diet to a Paleo diet.

https://glutenfreehomestead.com/2017/02/differences-gluten-free-diet-paleo-diet/

 

On the AutoImmune Paleo Protocol diet, you get your energy by consuming and utilizing healthy fats instead of carbohydrates.  Thiamine is required to turn carbohydrates into energy for the body to use.  When you are deficient in thiamine, your body can't turn carbohydrates into energy, so the body reverts to burning stored fats which doesn't require as much thiamine.  

Processed gluten free foods are empty calories.  They are not enriched with vitamins like their gluten containing counterparts.  They contain texture and flavor enhancers that can further irritate the intestines.  They are often made of gluten free carbohydrates which still require lots of thiamine to process, but they're not enriched with vitamins, so they deplete your thiamine stores further until you get so low in thiamine your body reverts to its backup generator and burns stored fats.

Have your doctor check for vitamin and mineral deficiencies.  Checking for deficiencies is part of follow up care for Celiacs.

Supplementing with vitamins and minerals can be beneficial.  

When you become deficient in thiamine, the thiamine receptors on cells quit working.  Thiamine can't get into the cells.  Saturating your body with thiamine through high dose supplementation turns the cell receptors back on.  Once you heal, you may not need to supplement.  

Thiamine needs riboflavin and pyridoxine to work properly. 

Niacinamide will help your intestines heal so you can absorb more nutrients. 

Tryptophan is used to make some of those neurotransmitters like dopamine and serotonin.  

These are some of the eight essential B vitamins that are usually absorbed in the small intestine.  Usually you are deficient in more than just one of them.  Your body can't make them, you must consume them. 

Thiamine also needs magnesium to work properly.  Other minerals like iron, zinc, and calcium may be low.

Find a Celiac savvy Nutritionist who can help you choose nutrient dense foods. 

You need to choose nutrient dense foods, and healthy fats, Omega 3's in flax seed oil and olive oil.  Basically, just meat and veg. 

No potatoes!  They promote leaky gut syndrome like all the nightshades:  tomatoes, eggplant/aubergine, and all peppers and spices made from peppers. 

Doctors are not as knowledgeable about Celiac Disease and vitamin deficiencies as they need to be.  Please get checked!

 

 

 

 

[Sam100]

Wow Thanks guys, especially knitty kitty for the very helpful advice. This is really informative.

I am shocked about potatoes? I was thinking after I was on the fisano diet for around 6-8 months, I would add potatoes.....without potatoes I am not sure what other carbohydrate I can add? since it would be very difficult to just get the bulk of my calories from rice? i.e. 1500kcal?

[GFinDC]

Hi Sam,

Some people do ok with quinoa or buckwheat.  Buckwheat is not actually wheat or related to wheat, it's just a name.  Sweet potatoes/yams, bananas, plaintains, etc are options.  Some gluten-free flour mixes use bean flour in them.

[cyclinglady]

4 hours ago, Sam100 said:

Wow Thanks guys, especially knitty kitty for the very helpful advice. This is really informative.

I am shocked about potatoes? I was thinking after I was on the fisano diet for around 6-8 months, I would add potatoes.....without potatoes I am not sure what other carbohydrate I can add? since it would be very difficult to just get the bulk of my calories from rice? i.e. 1500kcal?

I do not have issues with nightshades.   Best to keep a food/symptom  journal to help you determine food intolerances and minor allergies (allergy or food intolerance testing is 50-50 (accuracy) at best:

https://www.aaaai.org/conditions-and-treatments/library/allergy-library/IgG-food-test

Need more calories?  Consume plenty of fat!  

The AIP diet is great, but it is just a means of jumpstarting your healing.  It is very restrictive for the first few weeks.  It is meant to help you identify the unique set of foods that can bother you.  

I must also share that I am the opposite end of the spectrum when it comes to vitamin supplements.  I take none.  Well, I took iron for a few months after my diagnosis as prescribed by my doctor.   Once my lab tests normalized, I stopped the iron.  I get all my nutrients from my relatively good diet.  My doctor runs a mineral and vitamin panel and I am not deficient.  I have also healed from celiac disease based on a repeat endoscopy.  

But everyone is different.  We each must find our own way of healing.  

 

[knitty kitty]

Here's one article...there's more at NIH...

Potato Glycoalkaloids Adversely Affect Intestinal Permeability and Aggravate Inflammatory Bowel Disease

https://pubmed.ncbi.nlm.nih.gov/12479649/

Cycling Lady is so fortunate to have healed her intestinal damage on the Fasano diet.  Dr. Fasano did research into zonulin and how it promotes leaky gut syndrome.

Here's an article on what to eat.

https://www.amymyersmd.com/2018/04/eat-not-eat-reverse-autoimmune-disease/

Hope this helps!

[Guest059483]

Comment Deleted.

 

 

[cyclinglady]

11 hours ago, Hellegeist said:

Hi Sam,

Check my post here, I plan to expand on that when I have time since there is not very many people discussing these important facts: 

 

And watch this video series:

 

Why would you take advice about celiac disease from a chiropractor instead of a Gastroenterologist who researches celiac disease? 

Cross reactors are a myth when it comes to healing from celiac disease.   Read my response to your link as there is no sense repeating it.  

By the way, do you even have celiac disease?  No offense, but you are a new member offering gluten-free advice and it would be nice to know if you actually have celiac disease or have been diagnosed with NCGS.   And I am not discounting those who have been forced to diagnose themselves.  My own husband went gluten-free 20 years ago per the advice of his medical doctor and my allergist.  Thankfully, the gluten-free diet worked!  In retrospect, we wished he could have had the benefit of a proper diagnosis, but celiac disease was not well known 20 years ago.  

 

Edited April 26, 2020 by cyclinglady

[Sam100]

Thanks everyone!

All the information here has been very educational. Much appreciated.