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New and Frustrated


AmandaA
Go to solution Solved by Scott Adams,

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AmandaA Newbie

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. 


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Wheatwacked Veteran
(edited)

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 by Wheatwacked
trents Grand Master

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.

  • Solution
Scott Adams Grand Master

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 Newbie

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 Grand Master

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 Rookie

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. 


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Tracey Thomas Rookie

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 Grand Master

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 Explorer
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 Rookie

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 Rookie

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 Grand Master
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 Grand Master

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 Rookie

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 Rookie

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 Rookie

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 Grand Master
(edited)

 

 

Edited by knitty kitty
Scott Adams Grand Master

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

trents Grand Master

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 Grand Master
(edited)

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 by knitty kitty
Add more information
  • 3 months later...
Tracey Thomas Rookie

So I’m back. Sorry for delay this has been a very expensive exhausting experience that I feel is still not resolved. So the reason for the B-12 issue is. Doctor tested me for alpha gal my test came back positive but numbers weren’t high enough for doctors. Meaning allergist., family doctor to think I should be having this kind of reaction. So there for the B-12 vitamins I was taking was a gummie form. So st this time thinking it’s the alpha gal I had to stop everything that was gelatin, anything that couldn’t swim or fly. The ingredients in things. So I’ve done this I’ve cleaned my system and things were getting better. I’m still scared from the hives that broke out all over the upper part of my body from trunk up. Scaring is on stomach and back area in some places. So any how I had allergy test done doctor said I wasn’t allergic to wheat that I was fine to eat gluten. So I still avoided gluten just to make sure. Well around Christmas I thought maybe I could try a little dessert so I did and I could tell over time it was making me tired but it was so good. So time went on and I tried natures own butter bread as toast with my eggs. That was ok couldn’t really tell anything so I thought darn I might be ok. So I’m eating regular instant oatmeal packs the cinnamon spice. Soon as I finished it my stomach was killing me. The day before I had the same thing but didn’t notice this like this time I ate it. But I did notice a burning itchy area on my left shoulder like collar bone area. Well it’s still there . So it’s same kind of spot that I broke out in prior at the beginning of all this. Now I’m confused my test for celiac which was blood test was negative. My allergist told me he believed I had a major health problem going on that could either be a form of cancer, rheumatoid arthritis, or my hypothyroidism was messed up. So had blood test done for rheumatoid arthritis that came back negative. My thyroid numbers were good I’m on levothyroxine for that. And nothing else was done so left it at alpha gal. Could this still be celiac. 

Scott Adams Grand Master

So just to clarify, celiac disease is an autoimmune disease rather than an allergy, and you mentioned that you had allergy tests done. Can you share with us your celiac disease blood test results along with the reference range for a positive test? Also, did you get the results back for your DH biopsy? 

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

Tracey Thomas Rookie

So yes I am aware that celiac is not an allergy. This is just the steps the doctors put me through. The Dermatologist results came back as a form of hives. A type I’ve never had so I didn’t think they were but test came back as a form of hives. So my celiac test iga was 229 the range was 70-400 so mine fell in normal range. 

trents Grand Master
(edited)
38 minutes ago, Tracey Thomas said:

So yes I am aware that celiac is not an allergy. This is just the steps the doctors put me through. The Dermatologist results came back as a form of hives. A type I’ve never had so I didn’t think they were but test came back as a form of hives. So my celiac test iga was 229 the range was 70-400 so mine fell in normal range. 

@Tracey Thomas, Is that the only celiac test that was run? From the magnitude of the reference range, that looks like it was the "total IGA" test to check for IGA deficiency. It is not checking for celiac disease per se. If you are IGA deficient, it can cause false negatives in the individual IGA celiac antibody tests. Were there any other celiac antibody tests run?

Edited by trents

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    • cookiesyum
      The easiest way to remember the difference between the cholesterol types is HDL;   H=healthy equals healthy (omega 3, 7, limit 6 & 9 MCFA'S =Medium Chain Fatty Acids. 3= coconut oil, 7= sunflower oil, avocado. The higher your HDL the healthier you are & less likely to experience strokes, clogged arteries Etc. You can even use cold expeller pressed coconut oil on your skin and that is the best kind of coconut oil to eat as well. You want your HDL much higher than your LDL, it will help you stay healthy.   LDL;    L=Lousy. Meat fats, processed fats.  The higher your LDL is the more likely you will have strokes, clogged artery is, heart disease, fatty liver.   Then there's lipids... they are the culprit to be blamed for many heart attacks and things like that they are very small round particles that transport fats. You can have a low overall cholesterol reading and most of it be healthy cholesterol and have a ton of lipids and there's nothing you can do to change the lipid count. High number of lipids is very dangerous.   I'm going on statins is extremely dangerous if you ask me it's just completely my opinion, because I have seen so many of my elderly friends bleed to death internally because of the statins. I mean you wouldn't take all the oil and grease out of your car or a motorcycle and then try to drive it that way would you? You see that's what statins do they remove all of your bodies fats and it doesn't matter whether it's healthy fats or a lousy fats. It removes all of them and then your body can't function properly. You have to have fats to keep your skin supple and to stay warm. Your body also needs fats to digest & process certain nutrients, amino acids & vitamins.   Your brain is composed of fat so is that something you really want to remove with a pill every morning and night?   The thing about statins is that they also make the blood vessels and capillaries permeable. So this is how my friends who were on cardiac medication for a long time and statins ended up bleeding internally to death.   If you want to make sure that your heart is healthy, take odorless garlic at night and magnesium, vitamin K & calcium.     
    • pdm1981
      It's also a symptom of EPI.
    • Wheatwacked
      Yes.  Proportionately a small piece to a toddler is like a whole slice to an adult.  This is an important clue.  She was doing well, accidentally ate gluten and later the old behavior returned. I remember reading posts here of people reacting to a kiss from someone who had just eaten gluten. Recent research indicates that 40% of first degree relatives of someone with Celiac have undiagnosed Celiac Disease.  Father, mother, siblings.  There is a whole list of symtoms of "silent celiac".  Here is an article of symptoms possibly mistaken for other causes than Celiac Disease.  When I finally stopped gluten at 63 years old, I counted 19 things that improved, including lifelong mouthbreathing.  I never smelled bad things, so I as a kid, I learned to respond to the other kid's response in order to not seem weird. I really recommend you pursue testing for all the family if you can, and the whole family following GFD.  It is difficult at first, but the benefits will be worth it.  
    • Visionaerie
      I get these but where we are, they are called chicken potstickers. I would obviously suggest that it is the ginger in the product that is causing a stimulative digestive effect! So you might want to do what I do, just cook one of them with the rest of your meal so you don't have the same effect. I love the Feel Good products but they are on the expensive side. (I also drink Reed's ginger brew so in general, ginger is a friend of mine..when delivered at the right dose). Hope this helps and have a warm healthy week!
    • ognam
      Has anyone had Steatorrhea (oily/fatty poop) as a temporary glutening symptom or should I be concerned I've introduced chronic gluten somewhere (like in meds)? I haven't gotten Steatorrhea since before I went gluten free. However, I moved in the past few weeks and haven't been as careful - I've eaten at restauraunts with cross contamination but only experienced minor symptoms like headache. The past week, I ate only gluten free food at home except I went to Red Robin and got fries (told them gluten-free; allergy). The next day I had Steatorrhea and the day after that.   I know it's a symptom of malabsorption so I was wondering if it was the kind of thing that could be caused by one event or if it was due to a more chronic issue. Of course I will speak to a GI but I recently moved and need to find one.   Thank you for any info
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