New and Frustrated

[AmandaA]

Hello all! 
 

I am seeking some possible support here, since doctors just aren’t ‘convinced’ but I’m running out of options. Been dealing with this pain and process for quite a while, and most recent pertinent labs and such from GI will be included below. I’ve had everything from abdominal pain, dizziness, fatigue, iron deficiency anemia, ITP, POTS, muscle pain, joint pain, headaches, and constipation/diarrhea for what seems like forever. Every test has been run, to the point that I have a bone marrow biopsy in two days to rule out Leukemia and systemic Mastocytosis. Doctors have not found a cause for all these issues otherwise.  If these come back negative, to me, it’s Celiac’s. Maybe someone here can weigh in? 
 

Recent applicable tests:

Tissue Transglutaminase Ab, IgA, S, and IgG both negative. 

Immunoglobulin A (IgA), S is LOW

Celic Gene Pairs Present

Duodenum biopsies: Intraepithelial lymphocytosis with normal villous architecture. Plasma cells are present, but there is no increase in lamina propria inflammation, and no foamy macrophages. This can be associated with symptomatic, latent, or partially treated gluten sensitivity (celiac sprue), dermatitis herpetiformis, and first degree relatives of gluten sensitivity. Other associations include systemic autoimmune disorders and NSAID use.

 

I don’t use large amounts of NSAIDs, so I shared that with the doc, but they are passing me on to the next specialist. Any thoughts on this? I’ve decided to go gluten free, and am assuming that it will take quite some time for things to improve if it is in fact Celiac’s, but how likely is it that it’s Celiac’s if the tissue tests were negative and considering what I’ve shared above?

Trying to navigate a new and frustrating road, so any tips on vitamins and supplements is greatly appreciated. Docs just keep trying to treat the symptoms I’ve had and I’m sick of prescription pain killers and things that aren’t treating the underlying issue. 

[Wheatwacked]

Some people are seronegative and biopsy negative and still have Celiac Disease.  You have the genes and the symptoms.

Depending on your comorbid deficiencies you should notice some  improvements quickly but it can take years to fully heal.

Here are what I went through.  They will help you heal faster.  It took years for me to identify them so your recovery could be faster.  When my son was diagnosed at weaning, it only took a few months on Nutramigen.  I stayed in denial until 63.

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 650 mcg a day, Thiamine, Choline, and Iodine.

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?

Iodine – 1000 mcg of Liquid Iodine once or twice a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.

Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

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 indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 650 mcg a day, Thiamine, Choline, and Iodine.

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?

Iodine – 1000 mcg of Liquid Iodine once or twice a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.

Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

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 indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

Edited September 24 by Wheatwacked

[trents]

You could also be dealing with NCGS (Non Celiac Gluten Sensitivity) instead of celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Since you have had all the testing done for celiac disease, the next logical step is to get serious about going gluten free and see if your symptoms start improving.

[Scott Adams]

How much gluten were you eating on a daily basis before your blood and biopsy tests for celiac disease were done? It's recommended to eat lots of gluten, at least two slices of wheat bread per day for 6-8 weeks before getting tested, otherwise results could be false negative.

You can still have celiac disease with negative blood test results, although it's not very common: 

Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/ 

Seronegative Celiac Disease - A Challenging Case:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/ 

Enteropathies with villous atrophy but negative coeliac serology in adults: current issues:
https://pubmed.ncbi.nlm.nih.gov/34764141/ 

 

[AmandaA]

Scott, I can’t recall, but I don’t think I was eating that much bread each day, so it may have been the case I didn’t have enough in my system? Thank you for the links, I will explore. 
 

And ‘Trents’ that’s what I’m planning to do. This week is my first week fully gluten free and I am realizing that with the ‘May contain wheat’ warnings, my pantry is needing an entire makeover. Oof. I hate to do it just to have nothing improve, but I’m hoping it is the answer with everything else showing negative, and hoping the issues I’ve been having with nerves, vision, muscles, and such being caused by nutrient deficiencies. 

[trents]

Newer "gluten challenge" guidelines call for 4-6 slices of bread (or the gluten equivalent) daily for at least 2 weeks before the antibody testing blood draw or the endoscopy with/biopsy. But I would give it longer than two weeks to be sure you get a valid testing experience, at least four weeks. So, if you ever want to get tested again for a formal diagnosis, keep that in mind. And many people find that their reactions are much stronger to gluten once they have been off of it for a significant amount of time. Here is a primer to help you get off to a good start on the gluten free diet: 

 

[Tracey Thomas]

Hi, I’m recently new to the celeiac disease. I’m still going through testing. I’ve had major pain in stomach for years off and on like stabbing fold you over can’t move type pain. I assumed it was gas pains but had a lot of that too. Now after going back and forth to doctor for 2 years with same symptoms just new ones were added every time. Very fatigued muscle weakness felt like my legs could collapse. I’d sleep all night thinking I was good. I’m always so tired as if I had no sleep. Terrible headaches joint pain numbness and tingling in fingers. I was diagnosed with hypothyroidism. I have circulation problems and Renards disease hands and feet stay cold. Now 5 weeks ago I woke up with a rash on hip that itch so bad it was red purplish bumps I thought was shingles went to doctor several times they told me it wasn’t shingles but gave me a steroid and a cream it didn’t really help I started getting more on my elbows all down both sides my chest and sides of breast’s needless to say I was going crazy it hurt it felt like it was stinging and itching so bad. I went to emergency room had low grade fevers and blood pressure was up never had that issue I also have major brain fog through all this is all of a sudden feel dizzy like it come and go quick. With the dizziness. So doctor in emergency room ask have I ever been sent to a rheumatologist. I haven’t. So they referred me to dermatologist and dermatologist did 3 biopsies and was suspecting dermatitis herpetformis . A reaction to celeiac disease. Doctor put me on another round of steroids for 10 days and gave me something to help me sleep and a cream to help the itching. It started to help still after 4 weeks I have places that are still there but fading. I’m currently out of steroids and I ate brownie and woke up with sore throat so tired neck was hurting itching hairline had bumps and back of neck ate blue bells new chocolate ice cream with brownie and truffles in it absolutely delicious but 5 minutes after my throat felt like it was closing up had severe itching and bumps on front of neck and elbows and arms and under breast. Pain in stomach felt nauseous. So I go back Tuesday for final results of biopsies from dermatology. They don’t want me to change anything until testing is over but I’m so miserable. 

[Tracey Thomas]

Also I had low b12 but my blood test came back normal for celiac not sure if it was because I didn’t eat anything at that time. 

[trents]

Welcome to the forum, @Tracey Thomas!

Can you be more specific about the the blood test that was done for celiac disease? There isn't just one that can be run so it would be helpful to know which one or which ones were run to get an idea if others should have been run that weren't. Here is an article to help you understand what I'm talking about: 

In order for celiac disease testing to be valid you must be eating significant amounts of gluten containing foods for weeks up to the time of testing. Often, people who suspect they may have celiac disease will experiment ahead of testing with the gluten free diet or at least cutting back significantly on their gluten intake. By so doing, they sabotage the testing. A person should be consuming at least 10g of gluten (the amount found in approximately 4-6 slices of bread) daily for several weeks leading up to the day of testing. Also, if a person has certain medical conditions such as anemia and diabetes or if they are IGA deficient (see the article I linked) it can skew the IGA blood tests down toward the negative range. It's really important that a "total IGA" test be ordered to check for IGA deficiency but many physicians neglect to do this.

 

 

[glucel]

On 9/24/2024 at 3:56 PM, Wheatwacked said:

Some people are seronegative and biopsy negative and still have Celiac Disease.  You have the genes and the symptoms.

Depending on your comorbid deficiencies you should notice some  improvements quickly but it can take years to fully heal.

Here are what I went through.  They will help you heal faster.  It took years for me to identify them so your recovery could be faster.  When my son was diagnosed at weaning, it only took a few months on Nutramigen.  I stayed in denial until 63.

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 650 mcg a day, Thiamine, Choline, and Iodine.

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?

Iodine – 1000 mcg of Liquid Iodine once or twice a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.

Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

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 indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 650 mcg a day, Thiamine, Choline, and Iodine.

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?

Iodine – 1000 mcg of Liquid Iodine once or twice a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.

Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

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 indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

Just checking that you are taking 1000 mcg b 12. The reason I ask is because I take 100 which I thought was a lot at over 4000% of rda even though the body allegedly throws off what is not needed.

[Tracey Thomas]

I take 2000 that’s what my doctor told me to take. Of the B-12 thanks for information though. I’m new to this celeiac so I appreciate any help 

[Tracey Thomas]

The hardest part for me is this terrible rash it’s now flaring up since I’m done with steroids. 5 weeks of the rash I’m ready to pull my hair out. Has anyone had this problem this long? I also was so use to just getting up going in kitchen to grab a snack now I’m like what am I gonna eat and I’m frustrated  just haven’t found a way to deal with this yet I’m still in shock 

[Scott Adams]

On 9/28/2024 at 8:21 AM, Tracey Thomas said:

Hi, I’m recently new to the celeiac disease. I’m still going through testing. I’ve had major pain in stomach for years off and on like stabbing fold you over can’t move type pain. I assumed it was gas pains but had a lot of that too. Now after going back and forth to doctor for 2 years with same symptoms just new ones were added every time. Very fatigued muscle weakness felt like my legs could collapse. I’d sleep all night thinking I was good. I’m always so tired as if I had no sleep. Terrible headaches joint pain numbness and tingling in fingers. I was diagnosed with hypothyroidism. I have circulation problems and Renards disease hands and feet stay cold. Now 5 weeks ago I woke up with a rash on hip that itch so bad it was red purplish bumps I thought was shingles went to doctor several times they told me it wasn’t shingles but gave me a steroid and a cream it didn’t really help I started getting more on my elbows all down both sides my chest and sides of breast’s needless to say I was going crazy it hurt it felt like it was stinging and itching so bad. I went to emergency room had low grade fevers and blood pressure was up never had that issue I also have major brain fog through all this is all of a sudden feel dizzy like it come and go quick. With the dizziness. So doctor in emergency room ask have I ever been sent to a rheumatologist. I haven’t. So they referred me to dermatologist and dermatologist did 3 biopsies and was suspecting dermatitis herpetformis . A reaction to celeiac disease. Doctor put me on another round of steroids for 10 days and gave me something to help me sleep and a cream to help the itching. It started to help still after 4 weeks I have places that are still there but fading. I’m currently out of steroids and I ate brownie and woke up with sore throat so tired neck was hurting itching hairline had bumps and back of neck ate blue bells new chocolate ice cream with brownie and truffles in it absolutely delicious but 5 minutes after my throat felt like it was closing up had severe itching and bumps on front of neck and elbows and arms and under breast. Pain in stomach felt nauseous. So I go back Tuesday for final results of biopsies from dermatology. They don’t want me to change anything until testing is over but I’m so miserable. 

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:

 

[knitty kitty]

I take Niacin Vitamin B 3 for my Dermatitis Herpetiformis outbreaks.  I take the form of Niacin that causes flushing.  The flushing only lasts for half an hour or so and lessens the longer one takes Niacin.  The flushing is caused by a dilation of small blood vessels in the skin, but this helps reduce the dermatitis herpetiformis bumps.  

B12 is only one of the Eight B vitamins.  Everyone needs all eight.  The Eight B vitamins work together.  The one we can run short on the quickest is Thiamine B1.  Thiamine stores can be depleted in as little as three weeks to three days.  Thiamine interacts with each and every other B vitamin.  Just taking B12 can cause a deficiency in Folate B 9 because they work together.  Thiamine and Niacin work together.  Thiamine and Pyridoxine B6 make life sustaining enzymes.  Thiamine and Riboflavin B2 make other life sustaining enzymes.  Please supplement all eight B vitamins.  And Vitamin D which lowers inflammation.  And magnesium.  

I found the Autoimmune Protocol Diet, a low histamine Paleo diet, most helpful in recovery.  No processed foods, no dairy, no grains, no nightshades, no legumes.  Strict, yes, but very helpful in healing.  After a few weeks, add back in other foods, checking for reactions.

[Tracey Thomas]

Thank you knitty kitty very helpful information. I have flushing allot and don’t take anything but the b12 and d3 . Are the gummies in b12 just as good. I feel like since going through testing and waiting. I’m developing more issues joints in fingers sore throat. I don’t know what it is but when I’m working my arms and chest get so red like I done run a mile. People ask me all the time and I’m just like I’ve always done this. It’s weird 

[Tracey Thomas]

Find out my biopsies from dermatologist today. Can’t wait so I can figure out what to do next. I’ve been so embarrassed to go anywhere. I have the bumps on my face and neck now. At least I could cover the other places can’t do face and neck and hairline. This stuff is absolutely terrible 

[Tracey Thomas]

Hi, so I go back to dermatologist to get my stitches out and find out biopsies results. So now they are saying it’s a type of hives and there thinking it’s coming from my B12 that I started 6 weeks ago. Which was around this time I got terrible rash all over top part of body now it’s on my face neck and some in scalp hairline. So they told me to stop the b12 for 2 weeks take antibiotics and Zyrtec 3 times a day. I just don’t know what to think. Now get this I was low in B12 that s why I was told to start taking them. So  got the natures valley gummies B12 for adults. Anyone ever had this problem 

[knitty kitty]

 

 

Edited October 2 by knitty kitty

[Scott Adams]

Are the antibiotics to treat the hives? That seems like a strange approach to me, but I'm not a doctor.

[trents]

Why would B12 give you hives? Never heard of that! Are they saying some filler in the B12 tablet is causing the hives?

[knitty kitty]

Check the label and tell us what kind of B12 is in your gummies.  

If it's Cyanocobalamin, switch to a methylated (active) form of B12.  

Some of us need to take the active form of B12 because our bodies have problems turning other forms of B12 into the active methylated form due to MTHFR genetic variations.  

Take a B Complex supplement, too, because B12 needs the other B vitamins to function properly.

Edited October 4 by knitty kitty
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