Newly diagnosed.

[night mare]

Hi.  I'm newly diagnosed as having a gluten intolerance.

I have been following a gluten free diet. I was just wondering how long it will before my symptoms will subside. Any help would be very much appreciated.

[trents]

Welcome to the forum, night mare!

Just to be clear, when you say you have recently been diagnosed with gluten intolerance, do you mean celiac disease? There is also a gluten disorder known as NCGS (Non Celiac Gluten Sensitivity) or just gluten sensitivity for short. You have posted in the DH section. DH (Dermatitis Herpetiformis) is the skin manifestation of celiac disease that some get. So, what are your symptoms and how long have you been eating gluten free?

[night mare]

Hi. Trent's.

I was told by the dermatologist to follow a gluten free diet. She's confirmed DH but not celiac.

I see her again on the 16th if this month but not sure about celiac until then. But I thought it might help to join this site and get more information and some first hand advice.

[trents]

Thanks for the additional information. Celiac disease is the only known cause for DH. So, if you have DH, you have celiac disease. Some celiacs have only DH with no gut involvement but most with DH have gut involvement as well.

Is your only symptom the DH rash?

Also know that if you are on a gluten free diet there is no point in pursuing conventional "gut" antibody testing or the endoscopy with biopsy of the small bowel lining because healing would have taken place from removal of gluten from the diet and the tests will likely be negative. How long have you been eating gluten free now?

[night mare]

I have had biopsy on my back, where most of the rash is and also blood test. I was under the impression that my loose bowel movements were to do with the amount of fruit and veg that I have been eating for quite some time now. But since I have been on the gluten free diet my motions are formed. May I say that I have had no pain or diarrhea at all, ever.  I have been eating gluten free for about 6weeks now.

Originally I was given antihistamines and Dermavate for the rash. Both were unsuccessful and the Dermavate was torture, it made the stinging and burning far worse.

[trents]

I will attach an article which is a primer for learning to eat gluten free an not just lowering gluten consumption. It's easy to eat a lower gluten diet by cutting out the big sources of gluten but it's the hidden and unexpected sources that secretly undermine our attempt to live gluten free. Cross contamination is something that is hard to control when eating out and in consuming products that do not contain gluten as an intentional ingredient. For instance, you buy a bag of dried lentils to make soup and you don't realize that they are heavily cross contaminated with wheat seeds because of common growing practices, transport, storage and packaging. Pills can use wheat starch as a filler. You order from the gluten free menu at a restaurant but back in the kitchen is being cooked on the same surfaces as wheat containing foods and served/sliced with the same utensils. Those kind of things. It can be a real learning curve with lots of stumbling. Those celiacs with DH seem to be especially sensitive to CC (Cross Contamination).

If your best attempts at eating gluten free don't seem to be working very well to control the DH flareups, then talk to your doctor about a  med known as dapsone. For some, it is the only reliable treatment for DH. Also, some report that a low iodine diet helps.

 

Edited November 7, 2023 by trents

[night mare]

Thank you so much for all your information, it's really helpful.

I have tried my utmost to avoid gluten but it's an absolute minefield.

I do make a lot of my own food using gluten free ingredients. I must be more vigilant and scrutinise what I am using. 

[Wheatwacked]

3 hours ago, night mare said:

my loose bowel movements were to do with the amount of fruit and veg

Diarrhea is when your stools are loose and watery.There is a strong cultural pressure to blame most symptoms on any thing but gluten found in wheat barley and rye.  It is addictive.

On a gluten free diet you will not be getting vitamins and minerals that non gluten free foods are fortified with.  They are fortified because the western style diet has built in vitamin and mineral deficiencies that our government recognizes and so mandates their fortification.

  NHANES study found that from 2009 to 2010, the average daily dietary intake of vitamin A of US women ages 20–39 years was 596 mcg/day.  The RDA is 700 mg for women, 900 for men.

NHANES study, vitamin C deficiency or depletion existed in 32% of women ages 25–44 in the US.

The DV for Potassium is 4700 mg yet most eat less than 3000 daily.

42% are insufficient in vitamin D.

90% don't eat enough food with choline; liver, eggs, milk, beef.

If there was undetected villi damage in your small intestine, you may have malabsorption so that even if you are intaking enough you don't absorb it.

Nutritional Deficiencies in Celiac Disease

 

Edited November 7, 2023 by Wheatwacked

[night mare]

I know what you are saying but I'm entirely new to all this, so it's all about learning and taking advice from the  people with experience and the medical profession.

Hence my being on a gluten free diet which I was adviced to do. 

I agree you are what you eat. But it's having the knowledge to do so in the first place. 

 

[Wheatwacked]

This chart of vitamins and minerals may help to see the big picture.

Here is the list of what I take.  I am finally at the point where I can skip days.

If you like spreadsheets you can track and total your daily intake using the National Nutrition Database. FoodData Central I think there are websites that say they do it. I used SR28 for mine.   http://nutrientlog.doodlesnotes.net/  It showed me where I was consistently low.  Keep in mind the the RDA is the minimum amount needed to keep 97% of the HEALTHY population from showing symptoms of deficiency.  Ideal is well above the RDA but less than the Tolerable Safe Upper Limit.  The NIH Fact Sheet for Professionals is a great resource. example: Choline Fact Sheet for Health Professionals

• 10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder).
• 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism.
• 500 mg Nicotinic Acid - increase capillary blood flow
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenouslybut not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
• 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine).
• Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  I eat Nori and Kelp.  For some people with DH, iodine can exasperate the rash.

[Wheatwacked]

I like to think of the vitamins and minerals as the tools our body uses to process the raw materials in proteins and fats.  Like a factory, if you are short a tool, the whole assembly line is slowed. 

[night mare]

Thank you so much for all the information. It's a lot to process but I will wade my way through it and do my utmost to adhere to what I have gleaned from the it. 

Thank you again.

[Wheatwacked]

Good luck.  Don't be a stranger.

Edited November 9, 2023 by Wheatwacked

[night mare]

I certainly won't be a stranger.

No doubt I'll be back soon having a good old moan 😄