Feeling worse......I want to give up this diet.

[Lea89]

Hello,

 I am new here. After being diagnosed with celiac disease (biopsy, blood) I have been gluten free for 3.5 years already. Before I was diagnosed I suffered hair loss, bruises, constipation, I was sick often and exhaustion, I had no pain and could eat everything. I was so happy that all my symptoms have a name and it was celiac disease. Unfortunately since I have started gluten free diet, diarrhoea, indigestion, stomach cramps and prolonged periods appeared…..I visited many doctors but all my blood tests and others tests seemed to be fine so I got no advice. Lactose intolerance appeared later so I stopped eating lactose…..felt better for some time. After a while I started to get bad allergic symptoms, later was diagnosed with histamine intolerance…….The longer I am on gluten free diet, the worse I feel. I have stomach cramps every day, severe bloating, joint and back pain, ulcers in my mouth, fatigue, hair loss, burning feeling in my body, vomiting spells and migraines with aura, can’t sleep due to the pain and occasional low grade fever. My food intolerances are so big that I barely eat, yet I gained weight. Doctors say it’s IBS we have tried numerous remedies, medicine, psychotherapy, other diets, meditating, antidepressants, antiepileptics, antibiotics, antispasmodics and nothing helps. Now I am on low FODMAP, low histamine, gluten free, lactose free diet, I barely eat fruits and only boiled veggies. My diet consists of nutridrinks mainly. I honestly don’t understand what is going on.

I am seriously considering quitting this diet, though I am celiac, I didn’t have any of those problems before. Is there anything I could do? Does anyone have same or similar experience?

Thank you

[trents]

Welcome to the forum, Lea89! Sorry to hear of all your struggles. Sounds like a bummer of a way to live from day to day.

You said, "I am seriously considering quitting this diet, though I am celiac, I didn’t have any of those problems before." But it does sound like some of your symptoms (hair loss and constipation) were present before your diagnosis.

Are you still consuming dairy products and oats? The protein casein in dairy can cause villi blunting just like gluten does. This is not lactose intolerance for lactose is the sugar component of milk, though many celiacs also suffer from that. Do your nutri drinks contain dairy? In addition, about 10% of celiacs react to the oat protein avenin the same way they do to gluten.

Also, are you consuming products with sugar alcohol alternative sweeteners like sorbitol and xylitol? They cause many of us digestive upset. https://health.clevelandclinic.org/what-to-know-about-sugar-alcohols/

And have you been checked for SIBO?

Edited September 24, 2022 by trents

[Lea89]

20 minutes ago, trents said:

Welcome to the forum, Lea89! Sorry to hear of all your struggles. Sounds like a bummer of a way to live from day to day.

You said, "I am seriously considering quitting this diet, though I am celiac, I didn’t have any of those problems before." But it does sound like some of your symptoms (hair loss and constipation) were present before your diagnosis.

Are you still consuming dairy products and oats? The protein casein in dairy can cause villi blunting just like gluten does. This is not lactose intolerance for lactose is the sugar component of milk, though many celiacs also suffer from that. Do your nutri drinks contain dairy? In addition, about 10% of celiacs react to the oat protein avenin the same way they do to gluten.

Also, are you consuming products with sugar alcohol alternative sweeteners like sorbitol and xylitol? They cause many of us digestive upset. https://health.clevelandclinic.org/what-to-know-about-sugar-alcohols/

And have you been checked for SIBO?

Hello,

thank you for your answer.....I know I had some symptoms before but I could still live my life.
I don't consume oat but unfortunately still milk – mozzarella, cottage (without lactose).  My nutridrinks contain milk as well......Because I barely eat I don’t know what I would eat instead of nutridrinks .
No, I have not been tested for sibo. I did ask one of my doctor but he wasn’t happy to test me. I will try to ask different one. Thank you a lot for your advice.

[knitty kitty]

@Lea89, welcome to the forum!

Have you been checked for vitamin and mineral deficiencies?  Celiac Disease causes malabsorption and malnutrition because the villi in the small intestine are damaged and cannot absorb the nutrients our bodies need for repair and health.

You listed symptoms that are very similar to symptoms that I had that turned out to be due to vitamin and mineral deficiencies.

Hair loss can happen when we are not getting enough of several vitamins and minerals.  I experienced hair loss, too.  Hair loss can be caused by the thyroid not getting enough Thiamine and deficiencies in Vitamin A, Vitamin C, and minerals like Copper and Selenium. 

Bruising and mouth ulcers can be symptoms of deficiencies in Vitamin C and/or Vitamin B12.  Histamine intolerance can be a result of low B12 and low Vitamin C because Vitamin C and B12 are needed to get rid of histamine.  Being sick often can be a symptom of zinc deficiency. 

Prolonged periods are a symptom of seriously low Vitamin D.  Frequently joint and back pain is from low Vitamin D levels.  My Vitamin D level was severely deficient.

Migraines with or without aura can be due to a deficiency of Riboflavin Vitamin B2.  I used to have migraines with aura when I was deficient in Riboflavin.

The exhaustion can be caused by a deficiency in Thiamine.  Symptoms such as "...diarrhoea, indigestion, stomach cramps, severe bloating, and vomiting spells..." are also symptoms of a serious Thiamine deficiency called Gastrointestinal Beriberi.  Thiamine deficiency can also result in SIBO.  Proper levels of Thiamine keep bacteria in their place and under control.

The "burning feeling" in your body may be peripheral neuropathy caused by deficiencies in several B vitamins like B12, Niacin, Thiamine, Pyridoxine, and Folate.

There are eight B vitamins.  We must get them from our diet or supplements every day because our bodies cannot make them nor store them for long.  We need more than usual if we get sick.  Because they are water soluble, we can lose the B vitamins if we have diarrhea or vomiting.

I, too, tried dairy based nutritional drinks, but only got worse.  The lactose intolerance and the autoimmune reaction to Casein, the protein in dairy which causes the same reaction as gluten, resulted in my becoming even more ill due to malnutrition.  I could not absorb the nutrients I needed.

I  stopped all dairy and followed the Autoimmune Protocol Diet which has been scientifically proven to promote healing in the gastrointestinal tract.  Meat and veggies, some fruit.  No dairy, no nightshades (potatoes, tomatoes, peppers and eggplant), no legumes (beans), no grains, no seeds, no nuts.  

I also supplemented with the eight B vitamins in a B Complex, additional Thiamine in the form Benfotiamine scientifically proven to help heal the gastrointestinal tract and Magnesium, Vitamin D, Vitamin A and Vitamin C, and other vitamins and minerals.  

Blood tests for Vitamin and mineral vdeficiencies are not accurate and frequently only measure how much of a vitamin or mineral one has injested in the previous twenty-four to forty-eight hours.  

Doctors are not well educated about vitamin deficiencies.  Doctors are trained to prescribe pharmaceuticals.  My doctors did not recognize my deficiencies as such.  When none of their prescriptions worked, they blamed me, saying I was making stuff up and wrote me off as a hypochondriac.  Luckily I learned about nutrition at university.  

Talk to a nutritionist or a dietician.  The Gluten Free Diet can be deficient in vitamins and minerals because we have cut out gluten based products which have been fortified or enriched with vitamin supplements.  

Supplement vitamins and minerals while you are healing.  Aim for a nutrient dense diet.  Cut out Gluten free facsimile foods which are not enriched and are nutritionally empty.

I hope this helps.  Keep us posted on your progress!

 

[Lea89]

16 hours ago, knitty kitty said:

@Lea89, welcome to the forum!

Have you been checked for vitamin and mineral deficiencies?  Celiac Disease causes malabsorption and malnutrition because the villi in the small intestine are damaged and cannot absorb the nutrients our bodies need for repair and health.

You listed symptoms that are very similar to symptoms that I had that turned out to be due to vitamin and mineral deficiencies.

Hair loss can happen when we are not getting enough of several vitamins and minerals.  I experienced hair loss, too.  Hair loss can be caused by the thyroid not getting enough Thiamine and deficiencies in Vitamin A, Vitamin C, and minerals like Copper and Selenium. 

Bruising and mouth ulcers can be symptoms of deficiencies in Vitamin C and/or Vitamin B12.  Histamine intolerance can be a result of low B12 and low Vitamin C because Vitamin C and B12 are needed to get rid of histamine.  Being sick often can be a symptom of zinc deficiency. 

Prolonged periods are a symptom of seriously low Vitamin D.  Frequently joint and back pain is from low Vitamin D levels.  My Vitamin D level was severely deficient.

Migraines with or without aura can be due to a deficiency of Riboflavin Vitamin B2.  I used to have migraines with aura when I was deficient in Riboflavin.

The exhaustion can be caused by a deficiency in Thiamine.  Symptoms such as "...diarrhoea, indigestion, stomach cramps, severe bloating, and vomiting spells..." are also symptoms of a serious Thiamine deficiency called Gastrointestinal Beriberi.  Thiamine deficiency can also result in SIBO.  Proper levels of Thiamine keep bacteria in their place and under control.

The "burning feeling" in your body may be peripheral neuropathy caused by deficiencies in several B vitamins like B12, Niacin, Thiamine, Pyridoxine, and Folate.

There are eight B vitamins.  We must get them from our diet or supplements every day because our bodies cannot make them nor store them for long.  We need more than usual if we get sick.  Because they are water soluble, we can lose the B vitamins if we have diarrhea or vomiting.

I, too, tried dairy based nutritional drinks, but only got worse.  The lactose intolerance and the autoimmune reaction to Casein, the protein in dairy which causes the same reaction as gluten, resulted in my becoming even more ill due to malnutrition.  I could not absorb the nutrients I needed.

I  stopped all dairy and followed the Autoimmune Protocol Diet which has been scientifically proven to promote healing in the gastrointestinal tract.  Meat and veggies, some fruit.  No dairy, no nightshades (potatoes, tomatoes, peppers and eggplant), no legumes (beans), no grains, no seeds, no nuts.  

I also supplemented with the eight B vitamins in a B Complex, additional Thiamine in the form Benfotiamine scientifically proven to help heal the gastrointestinal tract and Magnesium, Vitamin D, Vitamin A and Vitamin C, and other vitamins and minerals.  

Blood tests for Vitamin and mineral vdeficiencies are not accurate and frequently only measure how much of a vitamin or mineral one has injested in the previous twenty-four to forty-eight hours.  

Doctors are not well educated about vitamin deficiencies.  Doctors are trained to prescribe pharmaceuticals.  My doctors did not recognize my deficiencies as such.  When none of their prescriptions worked, they blamed me, saying I was making stuff up and wrote me off as a hypochondriac.  Luckily I learned about nutrition at university.  

Talk to a nutritionist or a dietician.  The Gluten Free Diet can be deficient in vitamins and minerals because we have cut out gluten based products which have been fortified or enriched with vitamin supplements.  

Supplement vitamins and minerals while you are healing.  Aim for a nutrient dense diet.  Cut out Gluten free facsimile foods which are not enriched and are nutritionally empty.

I hope this helps.  Keep us posted on your progress!

 

Thank you a lot! I had just basic vit testing like b12 and b6, my vit D is really low like forever. I have never heard about benfotiamine and I am going to try it, it won't hurt I guess. I will probably try to add some minerals to my diet.

I hope it helps me a bit otherwise I don't know.......

[Scott Adams]

This article may be helpful:

 

[knitty kitty]

@Lea89,  

Do check with your doctor about supplementing vitamins and minerals.  

Do get testing for deficiencies done BEFORE starting supplementing or the tests will reflect how much you've taken.  Vitamins are used inside the cells, so blood tests aren't always accurate.  

Do take a B Complex supplement and magnesium glycinate chelate along with Benfotiamine.  Benfotiamine (any type of Thiamine really) needs magnesium to function properly.  The B Complex supplement will ensure the Thiamine or Benfotiamine has enough of the other B vitamins to make enzymes and help the other vitamins do their jobs, too. The eight B vitamins all work together.  If you're low on one, you're probably low on the others as well.

The Eight B vitamins and Vitamin C are water soluble so any extra is simply urinated away.

Start with a low dose of Benfotiamine and build up gradually.  Sometimes there's a "Paradox Reaction" when you may feel worse, but keep taking Benfotiamine.  This is your body switching to running properly with sufficient thiamine.  

Do get your Vitamin D level up!  Vitamin D regulates your body like a hormone when at sufficient levels and helps calm your immune system. 

Do keep us posted on your progress!  

High dose Thiamine has made a huge difference for me!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

[sensitive celiac]

On 9/24/2022 at 9:41 AM, Lea89 said:

Hello,

 I am new here. After being diagnosed with celiac disease (biopsy, blood) I have been gluten free for 3.5 years already. Before I was diagnosed I suffered hair loss, bruises, constipation, I was sick often and exhaustion, I had no pain and could eat everything. I was so happy that all my symptoms have a name and it was celiac disease. Unfortunately since I have started gluten free diet, diarrhoea, indigestion, stomach cramps and prolonged periods appeared…..I visited many doctors but all my blood tests and others tests seemed to be fine so I got no advice. Lactose intolerance appeared later so I stopped eating lactose…..felt better for some time. After a while I started to get bad allergic symptoms, later was diagnosed with histamine intolerance…….The longer I am on gluten free diet, the worse I feel. I have stomach cramps every day, severe bloating, joint and back pain, ulcers in my mouth, fatigue, hair loss, burning feeling in my body, vomiting spells and migraines with aura, can’t sleep due to the pain and occasional low grade fever. My food intolerances are so big that I barely eat, yet I gained weight. Doctors say it’s IBS we have tried numerous remedies, medicine, psychotherapy, other diets, meditating, antidepressants, antiepileptics, antibiotics, antispasmodics and nothing helps. Now I am on low FODMAP, low histamine, gluten free, lactose free diet, I barely eat fruits and only boiled veggies. My diet consists of nutridrinks mainly. I honestly don’t understand what is going on.

I am seriously considering quitting this diet, though I am celiac, I didn’t have any of those problems before. Is there anything I could do? Does anyone have same or similar experience?

Thank you

I seriously suspect you are getting gluten from somewhere or are having a reaction to something else on top of celiac. Sometimes removing most of the gluten makes you more sensitive when you are exposed.  I had similar symptoms. They improved when I stopped going out to eat and tried to follow a paleo AIP diet. After I found how gluten was creeping into my diet, I was able to add back other foods, looking for a reaction and eliminating those foods. 

You could be experiencing cross contamination. The trick is to find out from where. Since it can come from multiple places, you must eliminate all possible points of contact, then when you feel better, reintroduce some , one at a time, to see if they are contributing factors.

If you have a convection oven or toaster that has ever been used for gluten, stop using it. 

Clean even the inside corners of your cupboards and drawers. That goes for your fridge too.  Even just a few crumbs gan get you sick 

If you live with non celiacs, try keeping an extra fridge to keep gluten free things separate so they don't get contaminated. Try using squeeze bottles for condiments. Put your name on them so others don't share them and possibly wipe the tip on a piece of bread or with a gluten contaminated cloth.  If you have shared areas, keep your food in a separate cupboard or on an upper shelf where crumbs/flour dust cannot fall into your food. 

Change dish towels, hand towels, and dish cloths regularly. Including scrubbers. These can harbor gluten and pass it on to your hands, or eating/food prep materials.

Get rid of scratched pans, pots and cutting boards.  Wooden cutting boards and utensils are known for this.  A small scratch or a join, such as where a handle is attached or metal is folded, can harbor gluten. Cookie pans, muffin tins are likely to harbor gluten. Scrub them well with lots of water 

Look on each thing you buy. Until this is resolved make sure all foodstuffs are labeled gluten free. For meats, make sure your grocer is not working with things like breaded chicken or stuffed porkchops and then preparing or serving your meats.  Cut out processed meats like marinated meats, cured meats, etc unless they are labeled gluten free or the manufacturer states on the website that they are gluten free.  "No gluten ingredients" is not the same as gluten free. Cross contamination can still occur  

Try to find a celiac group, such as the Canadian celiac association on Facebook or one of the other groups to get more tips.

I found my answers when I found that restaurants will tell you they can prepare gluten free food without understanding about cross contamination. A few people around me are "gluten free" but are unconcerned about minor cross contamination. It makes it unsafe to eat at their homes unless I bring my own food. A person in one of my groups reported friends and family would intentionally give her gluten because they thought it was funny. What is more common is those who do not believe celiac is real and either think a small amount won't make any difference, or who try to slip you some to prove you are not intolerant.  One good reason to bring your own food. If they love you, they will understand. Not necessarily the disease, but that it is important to you.  

I also found I have some kind of allergy. It improves after I vacuum and thoroughly clean. I also run an air purifier.

 

[Lea89]

On 9/25/2022 at 8:09 PM, Scott Adams said:

This article may be helpful:

 

Very interesting info, thank you!

[Lea89]

On 9/27/2022 at 9:44 AM, sensitive celiac said:

I seriously suspect you are getting gluten from somewhere or are having a reaction to something else on top of celiac. Sometimes removing most of the gluten makes you more sensitive when you are exposed.  I had similar symptoms. They improved when I stopped going out to eat and tried to follow a paleo AIP diet. After I found how gluten was creeping into my diet, I was able to add back other foods, looking for a reaction and eliminating those foods. 

You could be experiencing cross contamination. The trick is to find out from where. Since it can come from multiple places, you must eliminate all possible points of contact, then when you feel better, reintroduce some , one at a time, to see if they are contributing factors.

If you have a convection oven or toaster that has ever been used for gluten, stop using it. 

Clean even the inside corners of your cupboards and drawers. That goes for your fridge too.  Even just a few crumbs gan get you sick 

If you live with non celiacs, try keeping an extra fridge to keep gluten free things separate so they don't get contaminated. Try using squeeze bottles for condiments. Put your name on them so others don't share them and possibly wipe the tip on a piece of bread or with a gluten contaminated cloth.  If you have shared areas, keep your food in a separate cupboard or on an upper shelf where crumbs/flour dust cannot fall into your food. 

Change dish towels, hand towels, and dish cloths regularly. Including scrubbers. These can harbor gluten and pass it on to your hands, or eating/food prep materials.

Get rid of scratched pans, pots and cutting boards.  Wooden cutting boards and utensils are known for this.  A small scratch or a join, such as where a handle is attached or metal is folded, can harbor gluten. Cookie pans, muffin tins are likely to harbor gluten. Scrub them well with lots of water 

Look on each thing you buy. Until this is resolved make sure all foodstuffs are labeled gluten free. For meats, make sure your grocer is not working with things like breaded chicken or stuffed porkchops and then preparing or serving your meats.  Cut out processed meats like marinated meats, cured meats, etc unless they are labeled gluten free or the manufacturer states on the website that they are gluten free.  "No gluten ingredients" is not the same as gluten free. Cross contamination can still occur  

Try to find a celiac group, such as the Canadian celiac association on Facebook or one of the other groups to get more tips.

I found my answers when I found that restaurants will tell you they can prepare gluten free food without understanding about cross contamination. A few people around me are "gluten free" but are unconcerned about minor cross contamination. It makes it unsafe to eat at their homes unless I bring my own food. A person in one of my groups reported friends and family would intentionally give her gluten because they thought it was funny. What is more common is those who do not believe celiac is real and either think a small amount won't make any difference, or who try to slip you some to prove you are not intolerant.  One good reason to bring your own food. If they love you, they will understand. Not necessarily the disease, but that it is important to you.  

I also found I have some kind of allergy. It improves after I vacuum and thoroughly clean. I also run an air purifier.

 

Hello,

thank you for your answer. It's impossible to for me to be getting gluten from somewhere else. Our household is completely gluten free and I don't eat outside at all due to histamine intolerance for two years now. My shampoos and soaps are gluten free. I honestly think I react to something else on top of this, don't know what it is and it is starting to be pretty annoying .

[Carmen L.]

Hi 

I would eliminate the nutridrinks as these often have hidden gluten or similar gluten. The next thing is your body products - what are you using to bathe, wash your hair, and lotions must be gluten-free. Remember you’re only 3.5 years so the Body and intestine is very weak and takes time to recover. Finally, and this is not maybe my place but if you are doing any cannabis or consuming alcohol there may be an allergy to consider. 

I hope you get some relief. 
 

[Wheatwacked]

On 9/24/2022 at 10:23 AM, Lea89 said:

Because I barely eat I don’t know what I would eat instead of nutridrinks

Here is a list of foods to eat refered to as the Fasano Diet. Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

The Haas diet for me is helpful when I get anorexic and don't eat enough. Note that he proposes cottage cheese and whey, but avoid milk. Most milk in the world except New Zealand and Ireland use Palmitic acid supplements in cow feed to increase milk fat and volume by 20%. Unfortunately it also increases the ratio of omega six (causes inflammation) in milk to 5 to 1. In contrast 100% Pasture fed milk omega 6:omega 3 is 1:1. Optimum omega 6 to omega 3 fatty acids is 2:1.  I have read estimates up to 25:1 in the Western diet. To help with Lactose intolerence fermented foods (not pickled with vinigar)and Inulin (soluable fiber) helps your good gut bacteria.  Choline for fat digestion (liver and gall bladder issues. And of course The B vitamins. 

THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE SIDNEY V. HAAS, M.D.

Raise your vitamin D, the fear of hypervitaminosis is over rated and stems from a manufacturing error in England in the 1950's where massive amounts were added to baby formula causing an epidemic of sick babies. The Royal Acadamy's response was to ban vitamin D supplementation and we are still suffering from this. I need 250 mcg a day (that is 10,000 IU a day in order to maintain a level of 80 ng/ml. My doctor agrees. Vitamin D moderates the autoimmune response.

"Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and suppressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years. Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL. Vitamin D Is Not as Toxic as Was Once Thought: Mayo Clinic.

CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY

Only 10% of people eating the western diet get enough choline. Choline and Potassium are the two essential nutrients that that the body needs the greatist amount of yet is underconsumed leading to high blood pressure (potassium) and birth defects and fat digestion and liver and gall bladder problems. Gall bladder surgery leads the list of surgeries performed. 

 

 

[knitty kitty]

On 9/29/2022 at 10:37 AM, Lea89 said:

Our household is completely gluten free and I don't eat outside at all due to histamine intolerance for two years now. 

Histamine Intolerance goes with Mast Cell Activation Syndrome.  

In Celiac Disease, mast cells multiply dramatically.  Mast cells release histamine (degranulation).  Mast cells that don't have enough thiamine B1 degranulate easily and frequently.

Vitamin B12 and  Vitamin C are needed to break down histamine.

I found choosing low histamine foods while following the Autoimmune Protocol Diet worked very well.  And, of course, supplementing the B Complex vitamins, Vitamin D, Vitamin C, Benfotiamine, and magnesium is helpful, too.

Get your histamine levels down and you'll react less to other things.  

[trents]

Histamine intolerance is a subset of MCAS. It can exist apart from MCAS but often they occur together with Histamine intolerance being one dimension of a bigger problem.

[Lea89]

On 10/6/2022 at 6:13 AM, knitty kitty said:

Histamine Intolerance goes with Mast Cell Activation Syndrome.  

In Celiac Disease, mast cells multiply dramatically.  Mast cells release histamine (degranulation).  Mast cells that don't have enough thiamine B1 degranulate easily and frequently.

Vitamin B12 and  Vitamin C are needed to break down histamine.

I found choosing low histamine foods while following the Autoimmune Protocol Diet worked very well.  And, of course, supplementing the B Complex vitamins, Vitamin D, Vitamin C, Benfotiamine, and magnesium is helpful, too.

Get your histamine levels down and you'll react less to other things.  

 

I was diagnosed with suspected MCAS, doctors in my country do not treat or give advice with neither of these.  The histamine diet is extreme and I can't do it for long. Unfortunately 1,5 year later I am still getting symptoms. Histamine intolerance started after I got covid.

[Lea89]

Thank you all for your advice and kind replies.

Doctor's only advice was not to think about it and eat everything - except gluten (I tried to follow this advice for two weeks and now I am paying for it). 

Thank you and wish you a lot of health!

[trents]

Have you tried the newer generation "non drowsy" antihistamines like zyrtec or allegra? Personally, I have found it impractical/impossible to follow a strict low histamine diet. There are just too many food things you have to cut out, including too many things that are truly nutritious. In addition to the non drowsy antihistamines, you might try a DAO supplement. Histamine intolerance is the result of low DAO production, often an offshoot of celiac disease which damages the cells in the gut that produce DAO. DAO stands for diamine oxidase.

[knitty kitty]

Thiamine helps the mast cells to stop releasing histamine.  

Vitamins B12 and Vitamin C break down histamine.

Did you talk to your doctor about supplementing with vitamins and minerals?  

The B vitamins and Vitamin C are water soluble and nontoxic.  

[Lea89]

2 hours ago, trents said:

Have you tried the newer generation "non drowsy" antihistamines like zyrtec or allegra? Personally, I have found it impractical/impossible to follow a strict low histamine diet. There are just too many food things you have to cut out, including too many things that are truly nutritious. In addition to the non drowsy antihistamines, you might try a DAO supplement. Histamine intolerance is the result of low DAO production, often an offshoot of celiac disease which damages the cells in the gut that produce DAO. DAO stands for diamine oxidase.

Is it dangerous to take antihistamines every day? I mean is it safe to do it long term? I may try it again. I did it for some time and it helped. Yes gluten free, lactose free was easy, low FODMAP a bit worse but low histamine, it's a nightmare!

[Lea89]

2 hours ago, knitty kitty said:

Thiamine helps the mast cells to stop releasing histamine.  

Vitamins B12 and Vitamin C break down histamine.

Did you talk to your doctor about supplementing with vitamins and minerals?  

The B vitamins and Vitamin C are water soluble and nontoxic.  

I did, as I said most of them don't know what it is, and doctors who know about it, don't even know which food are high histamine. I asked about supplements to take and they just shrug their shoulders, for them it's not that serious or life altering. My gastro thinks that histamine intolerance equals IBS. Or at least it seems to me like it. I think I will need to travel abroad to try different approach. When doctors laugh with it it feels like it's entirely in my head and I lose my hope.
Thank you I will try vitamins you suggested.

[trents]

7 minutes ago, Lea89 said:

Is it dangerous to take antihistamines every day? I mean is it safe to do it long term? I may try it again. I did it for some time and it helped. Yes gluten free, lactose free was easy, low FODMAP a bit worse but low histamine, it's a nightmare!

It is not safe to take first generation antihistamines like diphenhydramine  (benadryl) every day on a long term basis. The second and third generation antihistamines are safe when used that way, however. I have heard of no risks when taken in the prescribed doses. I have taken them everyday for years and so have millions of other people. Life would be unbearable for me otherwise as I have so many allergies. And keep in mind, it's the total histamine load that counts from all sources, including food and airborne substances such as pollutants and pollen, dust mites, etc. So, your histamine load can vary enormously from day to day and season to season.

Leah, if your want to know which foods are high in histamines, google it. Some foods, like bananas and tomatoes are not only high in histamines but they also trigger histamine release in the body.

Edited October 23, 2022 by trents

[knitty kitty]

3 hours ago, Lea89 said:

I did, as I said most of them don't know what it is, and doctors who know about it, don't even know which food are high histamine. I asked about supplements to take and they just shrug their shoulders, for them it's not that serious or life altering. My gastro thinks that histamine intolerance equals IBS. Or at least it seems to me like it. I think I will need to travel abroad to try different approach. When doctors laugh with it it feels like it's entirely in my head and I lose my hope.
Thank you I will try vitamins you suggested.

Doctors are trained to prescribe pharmaceuticals.  They get very little training in vitamins and minerals that we need.  Doctors think a magic pill will fix everything.   You're not deficient in pharmaceuticals.  You're deficient in the essential vitamins and minerals our bodies need to heal and repair itself.

Do take a B Complex supplement so you will get the eight essential B vitamins.  Essential as in we can't make them ourselves and must get them from foods and supplements.  

Hope you feel better.

[sensitive celiac]

On 9/24/2022 at 9:41 AM, Lea89 said:

Hello,

 I am new here. After being diagnosed with celiac disease (biopsy, blood) I have been gluten free for 3.5 years already. Before I was diagnosed I suffered hair loss, bruises, constipation, I was sick often and exhaustion, I had no pain and could eat everything. I was so happy that all my symptoms have a name and it was celiac disease. Unfortunately since I have started gluten free diet, diarrhoea, indigestion, stomach cramps and prolonged periods appeared…..I visited many doctors but all my blood tests and others tests seemed to be fine so I got no advice. Lactose intolerance appeared later so I stopped eating lactose…..felt better for some time. After a while I started to get bad allergic symptoms, later was diagnosed with histamine intolerance…….The longer I am on gluten free diet, the worse I feel. I have stomach cramps every day, severe bloating, joint and back pain, ulcers in my mouth, fatigue, hair loss, burning feeling in my body, vomiting spells and migraines with aura, can’t sleep due to the pain and occasional low grade fever. My food intolerances are so big that I barely eat, yet I gained weight. Doctors say it’s IBS we have tried numerous remedies, medicine, psychotherapy, other diets, meditating, antidepressants, antiepileptics, antibiotics, antispasmodics and nothing helps. Now I am on low FODMAP, low histamine, gluten free, lactose free diet, I barely eat fruits and only boiled veggies. My diet consists of nutridrinks mainly. I honestly don’t understand what is going on.

I am seriously considering quitting this diet, though I am celiac, I didn’t have any of those problems before. Is there anything I could do? Does anyone have same or similar experience?

Thank you

Try going on the AIP diet for a month and see if you feel better.  It is common for people qith celiac to develop other sensitivities, especially to dairy and oats. If you feel better on the aip diet, decide when you want to get off, then get off slowly. Reintroduce things one or two at a time. Keep a food diary so you can look for commonality of things giving you problems. Soy is one that sometimes creeps in. For others it may be that they react to sugar or caffeine. Food dyes or preservatives can be another issue.

Don't reintroduce gluten. You will feel worse. (Though you can sometimes eat gluten once without observable effect, it damages your gut and will likely cause a worse reaction if you eat it a second time)

Good luck to you.