plumbago

1 minute ago, Deb24 said:

Thanks for your reply. The doctors have just told me that it is IBS & are not doing any further tests which is why I thought I might try & figure it out myself. Just thought that there may be people with similar experiences.

Good for you to look for people with similar experiences - give it some time. People may chime in here.

17 minutes ago, Deb24 said:

I have recently been diagnosed with IBS Pain predominant. I have been struggling for 3 years with symptoms that started suddenly. I lost around 4 stones in a few months, couldn't eat, had diarrhoea at first but then turned into constipation probably due to drugs I was on. Bad pain around left side stomach & back. Feeling depressed, joint pains, fatigue, hives etc etc.  I have had every test possible however when I had an endoscopy I wasn't eating gluten & wasn't told that I should be. Nothing showed up on any of the tests other than a high fit test which was over 400?? Nothing was ever explained about this. I tried cutting out dairy & then gluten. Some of the symptoms have improved giving up gluten, I used to get flare ups where I couldn't get out of bed for 3 days & this has stopped since giving up gluten. I recently started pregablin which is helping with the pain. I still have most of the pain when I wake, sometimes at 3am or if I'm lucky 6am. I have to take Oramorph to ease the pain in the morning. I tried having a small amount of gluten the other day and the symptoms flared again. I get a really bad tight band feeling around my waist. Has anybody else experienced anything similar or have any advise at all to help me please.

Hi, This sounds awful and I'm so sorry you are going through this! What I can say just reading through your comment is: I'm surprised they didn't tell you ahead of your endoscopy to keep eating gluten, that they could not do the test unless they were. (Well, that's what they should have said!). A positive FIT test means there is blood in your stool - commonly, it may be coming from your digestive track, or it could be from a cut or other lesion in your anus or rectum. It is something you absolutely need to follow up on at any rate. Get an appointment to talk about that. Finally, it almost sounds like you have a severe autoimmune condition like Crohn's or indeed Celiac or both. I don't know. None of us who comment on here really knows what to advise based on the limited expertise we have and the limited amount of information we receive. Therefore, please do make a follow up appointment to talk about all of these possibilities. And check back in with us.

It’s important to keep eating gluten before the endoscopy in order to get an accurate reading. At least this is the understanding currently. The endoscopy will give you a good baseline reading, against which to judge healing later on. Others may know more, but from what I've heard, one piece of gluten-containing bread or toast a day should be enough.

There may be exceptions to this rule, but you can also always check with the endoscopy center, your doctor, or other provider. Best of luck.

15 minutes ago, Boymom30 said:

I too have been recently diagnosed, I’m a 24 year old new mom. Previously in my younger teens was diagnosed with IBS and gallbladder issues, but never found relief. Now with this celiac diagnoses it’s insane how many symptoms I’ve had that have been unexplained and now have a reason. I not only suffer from digestive issues but I get a HORRIBLE rash on my legs . I feel relieved to have answers and I think it’s crazy how many problems I’ve had no doctors could answer that I now associate with celiac. I’m new to this though and have cut out gluten but I feel I’m so highly sensitive to it that I’m nervous to eat anything that isn’t fresh. This site has already helped me so much I’ve been looking for a community that can help and I think I’ve found it! Thank you! I do have a question for all of you though and it’s personal and gross but I’ve had green poop for about 4 days now. Doesn’t matter what type of poop it is ie runny or solid it’s green and I haven’t eaten a lot of green veggies before you ask lol. Can someone help me understand if this is related to my celiac or what

Contrast agent, medication, or bile?

21 minutes ago, RMJ said:

I thought of something else - was the antibody test that you had designed to look for antibodies in people naturally infected, or people who were vaccinated?  That might make a difference in the range that is considered high.  The FDA authorized tests are intended to look for prior natural infection and are not recommended to look at vaccination status.

Yes, as mentioned, the test looked for antibodies to spike (ie, what the vaccination produces antibodies for), so it was just looking at that, and none of the other proteins. Thanks!

18 hours ago, Oldturdle said:

Congratulations on your high antibodies to the covid spike protein!  I am pretty sure this means you are very immune.  It may mean that you have been recently reinfected at the subclinical level, and were asymptomatic, but that means the vaccine worked.  Good for you for continuing to ware a mask.  You can't eat gluten with a mask on!

I have to wear a mask at work, but I do it other places as well (it's required indoors where I live, which is smart). As for getting infected (you said "re"infected), I tend not to think so because I am tested frequently. I will likely test the antibodies again, and if they're still high, I will think with greater certainty that it's the vaccine. But it just raises some questions for me.

And answers some too -- with antibodies that high, for me, there is no need for a booster. Indeed the healthcare agencies are starting to - at this date, Sept 4, 2021 - push back against boosters for the non-immunocompromised.

2 hours ago, RMJ said:

I’d say high antibodies to the coronavirus spike protein is good!  One of the boosters being studied is supposed to increase them almost 10-fold, which is considered to be a good thing.

Thanks, RMJ, yes, you'd think so! But it's so many months afterwards, and if, as is commonly being said these days, antibodies wane, I have to ask myself almost in disbelief what my antibodies were 3,4,5 months ago, if, nearly 8 months later, they are on the super high end?! It's a bit concerning to me. Again, it could have been an exposure, though I am very careful and test frequently, and it could have been a lab error. It's all just a bit puzzling.

4 hours ago, trents said:

What antibodies are you talking about as having spiked? Celiac antibodies or COVID? This is not clear to me from your post.

Sorry. When I said  "spike" I meant antibodies to the spike protein.

Hello,

I received the last of my two-dose Moderna vaccine in January, and recently had my antibodies (to spike) tested, and they were very very high. I test a lot (antigen and occasional PCR) and have never tested positive. I'm curious to hear from others who may also have gone out and gotten an antibody test. What were your results? I'm posting this on the Celiac site mostly because I'm actually a bit concerned that they were so high. I understand that it's possible I was exposed and my immune system kicked in, but I am wearing PPE nearly always at work, so I'm kind of doubtful. Thanks!

6 hours ago, CaseyH said:

For the past 6 months I’ve been dealing with muscle aches, muscle fatigue, brain fog, fatigue, chronic prostitis, and recently eczema only on my hands and feet. I had not been able to find an answer. I then stumbled upon the AIP diet and noticed a lot of people with food intolerances seem to be having similar issues. I started the diet and after just a few days I felt noticeably better. My eczema began to go away and so did the aches, prostitis even, and the brain fog. I started working out again after Day 4 or so and it was going well up until Day 7 where I felt achy again and muscle fatigued. I assumed it was because I was working out to hard and my muscles were still recovering, and around Day 13 I started feeling better than I ever had before. Almost no symptoms. I began to workout as well. This continued for a couple more days until I ate some plain crawfish and crab for lunch. Just that and nothing else. I almost immediately felt slight aches and uncomfortability. However it was not as noticeable as it had been in the past and shellfish are supposed to be one of those safe foods. 
 

Fast forward to the next day and I still feel that uncomfortableness and slight aches. I then accidentally ingested soy sauce with gluten in it and I felt like s$#& after. I could tell from then that gluten is one of the things that affects me for sure but I’m still not certain about the shellfish. Anyways, Im recovering form being glutened and after a few days I start to feel better. I have less muscles aches and everything seems to be getting better. I start exercising again and a couple days later I woke up with a sharper type of ache more noticeable on my left side. It almost felt like a nerve pain. It was not reminiscent of what the typical chronic aches I had previously felt felt like. It’s been a few days since then and my muscles are getting bette rebut I’m just worried about them getting worse again. 
 

I personally think it could be because of the exercise at this stage. I do a lot of boxing and one of the things I do is shadow boxing with weights in my hands, sometimes going at full speed.

 

And also from what is provided do you guys think that I only have to worry about gluten or that there is a good chance that I’m going to be intolerant to something as well

 

Thank you

I hope other frequent commenters can chime in about diet and food, but right off the bat, what caught my attention is the exercise. Of course, I'm just speculating here, but I've read of more than few cases of the effects of overexercise especially during the pandemic, and worked with a patient who had elevated CPK (rhabdo) due to other causes. Don't know if it's just an over reaction to extreme sloth that we get into sitting around in lockdown, sometimes, or what, but too much exercise can actually have some bad effects, one of the most severe is rhabdomyolisis (breakdown of muscle tissue), symptoms can be foamy urine, painful muscles, weak muscles, fever, rapid heart rate. Hopefully that's not it. Keep us posted!

Thank you very much @SW_Virginia_USA, those sound like excellent suggestions. Much appreciated.

Anyone know of good gluten-free outdoor dining options inside the city limits of Knoxville (or just outside)? Thanks!

Celiac is not a condition for which people take immune-suppressing medications. This borders on misinformation, and though I approved your comment, I truly hesitated, as a moderator. (Not that I represent this cite in any official way, I should add.)

Further, even people who are taking immunosuppressants should get the vaccine and have been recommended to do so, including by the CDC.

On 11/8/2019 at 10:56 PM, Jenna1028 said:

I'm in Florida and have access to medical grade CBD - not the stuff you buy in gas stations - but the 100% pure CBD. I was wondering if this is something that would work, but was too afraid to try, for fear of making it worse and/or aggravating the skin. 

Thanks for the info! 

So the stuff you buy in gas stations is K2 and is extremely dangerous. It is not even remotely comparable to medical marijuana, I should think.

9 minutes ago, Holly1917 said:

Can alkaline water help alleviate celiac symptoms? 

I think alkaline water is most effective at producing more expensive urine.

10 minutes ago, Abby357 said:

I would really appreciate any opinions, I am at my wits end! A year ago I noticed my teenage son had thinning patches in his hair. The doctor didn’t really know what it was, it wasn’t typical alopecia arreata. It was more thinned out in spots but not completely hairless. He had a regular blood panel and the only thing that was slightly low was his neutrophil count. Fast forward to a month ago and I asked the doctor to test my son for vitamin deficiencies which he was reluctant to do because he didn’t think anything would show up. It came back low in Vitamin D and B12. This made me start to wonder if it could be celiac. My Aunt and Grandma both have it. My son doesnt typically complain about stomach issues, but when I asked him he says he is super gassy and does frequently have diarrhea. He’s 14 so I don’t think it’s something he really wants to talk to his mom about. I have taken him for the celiac blood panel, but it’s been almost a month and still says ‘pending’. This seems super long to me for results. Any opinions would be greatly appreciated.

A month is way too long for those tests to result. They should be back in days. There might have been a processing error or the blood might not have been sent. Who knows. Get another panel done, would be my advice.

Not to get too gross, but there are enzymes in stool that are irritating and perhaps causing itching. A good remedy is a bidet or bidet-type hose. That will do the trick for sure.

5 minutes ago, trents said:

"Deamidated gliadin peptide (DGP IgA and IgG): This test can be used to further screen for celiac disease in individuals with IgA deficiency, which affects 2-3% of patients with celiac disease, or people who test negative for tTg or EMA antibodies. IgA deficiency in a patient may be indicative of other diseases that may cause villus atrophy, such as giardiasis, small-bowel bacterial overgrowth (SIBO) or common variable immunodeficiency (CVID).2

While it is very rare, it is possible for someone with celiac disease to have negative antibody test results. If your tests were negative, but you continue to experience symptoms, consult your physician and undergo further medical evaluation." from https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

I wonder if you have IGA  deficiency.

 

Her ttg-igg test was positive, weakly positive, but positive.

what were the letters before ttg? And what is the reference range?

That's weird, right? Based on everything you've posted and answered, that would not be a positive Celiac case. Are we missing something?

I would insist on some clarification. Me in your shoes, I'd fax a letter to the practitioner, along with a copy of the tests, asking for the reason behind the positive diagnosis, and clarification.

Next steps depend on getting an accurate diagnosis. This, to me, is not it. Others may chime in with their opinions.

16 minutes ago, kshuf said:

My adult son saw a primary care physician because of symptoms - gas, bloating, diarrhea, constipation, etc. The doctor ordered blood tests. The report reads:

Endomysial Antibody IgA01 Negative

tTG IgA01  3 U/ml 

Immunoglobulin A, Qn, Serum01 188 mg/dL

This report was accompanied by a letter saying, "You have celiac disease and should follow a gluten free diet."

Nobody in our family has ever been diagnosed with celiac, so there is not a strong genetic component.

We are very confused. What is the next step for him?

Can you put the reference ranges for the three tests? Was ttg igA positive or negative?

45 minutes ago, LoisT said:

Shock of my life when I was diagnosed with Celiac last year. WHA? I was 66 years old, and never had had a single symptom of the disease. “Possible Celiac” showed in a complete metabolic blood panel I’d had, which was done for something else entirely, then the endoscopy and, voila, Silent Celiac. Okay, I read up on things, I’ll play along, but HOW will I ever know how I’m doing? Will I need annual endoscopies, what? 

Annual? No! But you ask a good question.

You can do regular antibody tests to gauge if you've "been glutened," which can over time damage the lining of the small intestine, as I'm sure you know by now. I repeated an endoscopy last year (my second one in 10 years just so you know). I did have symptoms on diagnosis and biopsy so I was able to tell that I had improved.

Without symptoms, we are all curious to know what led the provider to do a celiac panel. Were you deficient in some vitamins? What on a CMP leads a provider to think "possible Celiac?" Please do share!

Plumbago

In my experience, doctors are very good at noting damage to the crypts and it usually aligns to what is found at biopsy. But users coming after me will tell you the opposite, most likely. And technically, they are correct. Your case may also be a bit different. In any case, please do keep us updated and thanks for coming back and posting.

I had second Moderna shot in mid-January. I had nausea, headache, fatigue and myalgia at 18 hours in. Then like a miracle it went away. Thank you vaccine makers.

Hi,

Hopefully you will be talking to the medical professional who ordered these tests! But my notes say, "If both DGP are high, celiac disease almost certain." Your doctor - or maybe others on here - may be able to tell you why the Ttg was neg but the DGP positive and what all that means. Good luck!