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Possible Celiac


Maa78search

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Maa78search Rookie

Hi! 

I'm a 44 yr old female with stomach issues since I was born. I tested negative for antibodies and clear colonoscopy back in 2018, but that GI did not perform endoscopy. I'm scheduled for a new colonoscopy with endoscopy towards the end of May. I've lost close to 30 lbs in 6 months and I'm about 105 now, I get severe pain randomly with lots of mucus and actual foam and I have to force myself to eat I lack appetite 98% of the time, when I am hungry I only crave starches and dairy. All my labs are normal no vitamin deficiencies which seem like a miracle since I never eat. I've got other autoimmune conditions like narcolepsy, small fiber neuropathy, and something not yet diagnosed yet. I had slightly elevated calprotectin, and I haven't changed any thing I eat yet since I thought the antibody test would have been positive if that was the problem ... My new GI seems to think my last GI was not very through at searching for my issue, she stated multiple biopsies would be taken from stomach all the way to the end, and commented if I lose more weight I'd need a feeding tube. Not sure if it's Celiac or IBD or both but I know one thing that triggers the pain and that's beer!! Haven't drank in years but that pain is extreme. My pain is pretty much located in 3 spots actual stomach, upper left near ribs , and lower right end of colon area, its always the same spots and with the pain comes the mucus and foam up to 6 times a day bowel movements no blood. As a baby couldn't have formula had to have goat's milk,  When I was a older kid I had severe stomach pain and the elders in my family made me drink Alka Seltzer and that just induced vomiting (horrible times)  Well Sorry for  my long intro, guess in May I'll know for sure and thanks for reading. 


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trents Grand Master

Welcome to the forum, Maa78search!

Which antibody tests were run? Many or most physicians will run only the tTG-IGA instead of a full celiac antibody panel. There are a number of celiac antibody tests that can and should be run since the tTG-IGA will miss about 20% of those from white European extraction and about 80% of those from black African heritage that actually do have celiac disease as confirmed by biopsy.

There is also the possibility that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there currently is no way to test. celiac disease must first be ruled out. NCGS is 10x more common than celiac disease and both require a commitment to gluten free eating.

Maa78search Rookie

TTG) AB, IGG

<1

U/mL

<6 No Antibody Detected

> OR = 6 Antibody Detected

(TTG) AB, IGA

<1

U/mL

<4 No Antibody Detected

> OR = 4 Antibody Detected

GLIADIN ANTIBODY PANEL    

GLIADIN (DEAMIDATED) AB (IGA)

8

Reference Range: <20 U

Reference Ranges for Gliadin (Deamidated Peptide)

Antibody (IgA):

 ... Show More

GLIADIN (DEAMIDATED) AB (IGG)

6

Reference Range: <20 U

 

Had all of them... 

Maa78search Rookie

IMMUNOGLOBULIN A . As well

trents Grand Master

Good! You had thorough antibody testing done and all of them were negative.

I would be looking at NCGS. But I also note you said when you were a baby you couldn't tolerate formula and had to be fed goat's milk instead. As an adult are you consuming dairy (bovine)?

Maa78search Rookie

So yes I'd definitely benefit from the biopsy, just curious would antibodies disappear with longterm disease? Say if a person had it since birth would those antibodies eventually not show?

Maa78search Rookie
2 minutes ago, trents said:

Good! You had thorough antibody testing done and all of them were negative.

I would be looking at NCGS. But I also note you said when you were a baby you couldn't tolerate formula and had to be fed goat's milk instead. As an adult are you consuming dairy (bovine)?

Yes I drink tons of milk like It's my main source of nutrition since I cannot tolerate eating. Allergy tests done,  no milk allergy.


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trents Grand Master

Let's back up a bit.

When you had your antibody testing done, were you still consuming regular amounts of gluten (Defined by the Mayo Clinic as two slices of wheat bread daily or the gluten equivalent)?

CMP (Cow's Mile Protein) can mimic the protein gluten for some people. And we are not talking about an allergic reaction to milk. Different immune system pathway.

No, antibodies would not disappear with long term celiac disease. NCGS does not produce antibodies. NCGS immune system pathways are not well-understood.

Maa78search Rookie
46 minutes ago, trents said:

Let's back up a bit.

When you had your antibody testing done, were you still consuming regular amounts of gluten (Defined by the Mayo Clinic as two slices of wheat bread daily or the gluten equivalent)?

CMP (Cow's Mile Protein) can mimic the protein gluten for some people. And we are not talking about an allergic reaction to milk. Different immune system pathway.

No, antibodies would not disappear with long term celiac disease. NCGS does not produce antibodies. NCGS immune system pathways are not well-understood.

I was not consuming 2 slices of wheat bread during testing I literally cannot eat a full sandwich and the milk protein would be a interesting factor since I consume so much of it... It's kinda like how diabetics crave sugar, I crave dairy , pasta, rice, potatoes and baked goods. Thanks for the info and input it's for sure helpful. 

trents Grand Master
(edited)

Pasta and baked goods would be sources of gluten. Gluten is found in wheat, barley and rye. Doesn't have to be sandwich bread, just anything with wheat flour (or barley or rye flour). That's why I added "or the gluten equivalent" to the two slices of wheat bread formula.

"I crave sugar, I crave dairy, pasta, potatoes and baked goods": all of these foods are high in carbs. I wonder if you have a candida infection. I would also suspect you have some vitamin and mineral deficiencies.

Edited by trents
trents Grand Master
1 hour ago, Maa78search said:

So yes I'd definitely benefit from the biopsy, just curious would antibodies disappear with longterm disease? Say if a person had it since birth would those antibodies eventually not show?

No, they would not disappear over time. However, we do see instances of remission from celiac disease but it generally returns in time.

Maa78search Rookie
31 minutes ago, trents said:

Pasta and baked goods would be sources of gluten. Gluten is found in wheat, barley and rye. Doesn't have to be sandwich bread, just anything with wheat flour (or barley or rye flour). That's why I added "or the gluten equivalent" to the two slices of wheat bread formula.

"I crave sugar, I crave dairy, pasta, potatoes and baked goods": all of these foods are high in carbs. I wonder if you have a candida infection. I would also suspect you have some vitamin and mineral deficiencies.

No Candida infection found, had full workup for hidden infections including infectious disease cultures and recent  full workup for vitamin deficiencies amoungst many other blood tests actually through Mayo Clinic all clear .. I was just going back through the GI situation because those symptoms of pain, mucus, rashes, are pretty persistent. I have 1 doc suspecting pancreatitis insufficiency, 1 suspecting crohns limited to small bowel and celiac, and Mayo is still trying to sort if it's all related to the other symptoms. It's hard to determine if any specific food causes more symptoms because the pain  varies besides the beer (that pain was unforgettable). Does Celiac cause excessive mucus and passing straight foam? And I'll add bowel movements do not relieve the pain . 

trents Grand Master
9 minutes ago, Maa78search said:

 Does Celiac cause excessive mucus and passing straight foam? And I'll add bowel movements do not relieve the pain . 

It can, yes.

Wheatwacked Veteran

In 1976 my son was diagnosed Celiac Disease as soon as he was weaned. He was given Nutramagen formula. We were lucky to find a doctor who knew about Celiac disease and he only had 13 patients.  

I also drink a lot of milk. Most of the time 100% grass fed. It has less omega 6 and never irritates even right before bed. 

Was the alka seltzer original, just aspirin and bicarbonate? That works for me. The other flavors with other stuff is nasty.

6 hours ago, Maa78search said:

All my labs are normal no vitamin deficiencies which seem like a miracle since I never eat.

Most blood tests only measure the amount in the blood and they are tightly controlled by homeostasis. They don't indicate intake status. Vitamin D, homeocyteine, B12 are accurate, but doctors insist that  >20 ng/ml (50nMole/L) is adequate. Lots of evidence points to Vitamin D (25-Hydroxyvitamin D) at 80 ng/ml (200 nMole?L) as the natural replete level

Choline deficiency is a good possible cause of your foamy poop. It is needed to digest fat and low enough can cause Non Alcoholic Fatty Liver, gallstones, gall bladder disease, Fetal neural tube defects and lots more. Only 10% of us eat the minimum. Phosphatidyl choline supplements will help. Choline is one of the most abundant salts in bile and helps keep the body clean

Why Do I Have Foamy Poop? "Foamy poop is typically the result of an increased amount of fat in the stool. This can be caused by a number of conditions including celiac disease, chronic pancreatitis, giardiasis, and cystic fibrosis. In babies, foamy poop can be related to breastfeeding. Treatment specific to the cause of your foamy stools will alleviate most gastrointestinal symptoms."

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    • trents
      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
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