Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Test Results/symptoms?


Carin3

Recommended Posts

Carin3 Rookie

Hi! Thanks for reading this. This is my first time on here. I am 34 years old and have 3 young children(3,4 and 6). I have had iron deficiency anemia for years. Iron pills don't really help. I finally went to a hematologist who started me on prescription iron and sent me for a GI consult. He did a endoscopy and colonoscopy. I was told everything looked fine. Luckily I went back in for the follow up and the biopsy for the endoscopy said findings suggestive of Type 2 celiac disease. I was surprised b/c this had never been mentioned before. The GI doctor said I didn't need to worry about a gluten free diet if I could control my anemia with iron pills and he sent me off for some blood test related to celiac. I knew a little about Celiac and researched more once I left his office. I was surprised that some of the symptoms I have gone to the doctors about over the years could actually be related to celiac. I have frequent joint pain (rheumatoid arthritis was ruled out), tingling in my hands and feet, headaches, fatigue, frequent cankor sores, anemia etc. I do have some mild abdominal cramping and gassiness but nothing horrible. Otherwise I dont really have any other GI symptoms. So here is the catch. My blood work came back negative but remember the biopsy result said suggestive of Type 2 celiac. I rarely read about this happening and don't know what to do. My GI said he doubted it was celiac (but I don't have the highest confidence in him after the above comments) however he did send my biopsy up to Yale to be read by someone up there. My joint pain and tingling seems to be getting worse and I am sick of being tired all the time. I have not heard back from Yale yet. I decided to go gluten-free one week ago to see if I notice a difference. I told my husband that the cramping and gassiness has all but disappeared everything else is still the same. But I dont know if those have gotten better b/c I am eating gluten-free or b/c I am probably eating a little healthier too. Anyway, would love some thoughts on my test results!! Thanks for taking the time to read this long post.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient
Hi! Thanks for reading this. This is my first time on here. I am 34 years old and have 3 young children(3,4 and 6). I have had iron deficiency anemia for years. Iron pills don't really help. I finally went to a hematologist who started me on prescription iron and sent me for a GI consult. He did a endoscopy and colonoscopy. I was told everything looked fine. Luckily I went back in for the follow up and the biopsy for the endoscopy said findings suggestive of Type 2 celiac disease. I was surprised b/c this had never been mentioned before. The GI doctor said I didn't need to worry about a gluten free diet if I could control my anemia with iron pills and he sent me off for some blood test related to celiac. I knew a little about Celiac and researched more once I left his office. I was surprised that some of the symptoms I have gone to the doctors about over the years could actually be related to celiac. I have frequent joint pain (rheumatoid arthritis was ruled out), tingling in my hands and feet, headaches, fatigue, frequent cankor sores, anemia etc. I do have some mild abdominal cramping and gassiness but nothing horrible. Otherwise I dont really have any other GI symptoms. So here is the catch. My blood work came back negative but remember the biopsy result said suggestive of Type 2 celiac. I rarely read about this happening and don't know what to do. My GI said he doubted it was celiac (but I don't have the highest confidence in him after the above comments) however he did send my biopsy up to Yale to be read by someone up there. My joint pain and tingling seems to be getting worse and I am sick of being tired all the time. I have not heard back from Yale yet. I decided to go gluten-free one week ago to see if I notice a difference. I told my husband that the cramping and gassiness has all but disappeared everything else is still the same. But I dont know if those have gotten better b/c I am eating gluten-free or b/c I am probably eating a little healthier too. Anyway, would love some thoughts on my test results!! Thanks for taking the time to read this long post.

Hi and welcome to the forum.

Your post is a little puzzling to me. I have never heard of Type 2 celiac; did he explain what that was??? If he was not suspicious of celiac disease, did he do any biopsies for celiac when he did the endoscopy? Normally, a minimum of 4-6 biopsies should be done because the damage from celiac in the small intestine can be patchy.

Many of your symptoms are indicative of celiac disease, and false negative blood tests are quite common. There are also people who test negative on the blood work who still carry the genes for gluten sensitivity/intolerance (different genes from the celiac genes)or the actual recognized (in the U.S.) celiac genes. Additional celiac genes are recognized in Europe. Many people on this forum do not have a diagnosis of celiac disease, (some have not even had any testing), but have determined that they are gluten intolerant (she puts her hand in the air) and avoid it. With many, all of their symptoms disappear completely, sometimes depending on how long they have been present. For some. many of the ,more serious side effects of gluten remain--the hypothyroid, diabetes, RA, etc.

I think it is a good idea to do a gluten free trial and see how your body reacts. Do not assume that positive effects are just because you are "eating better." You can eat better with gluten, and not show any improvement. It will be interesting to see what the folks at Yale have to say. Keep us posted.

Roda Rising Star

To be honest I'm suprised biopsy samples were even taken. Most EGD procedures where I am don't include small bowel biopsy unless there is an indication. It is good that your sample is getting looked at by another. Your doc obviouslly is not very informed. It is very common for people to have false negative blood work. If a person is IgA deficient then the standard Iga tests are invalid. If your biopsy is positive then you have celiac. Go gluten free. My slight gi problems went away very quickly on the diet. However the anemia has persisted for a year since gluten free, but it is now better and I won't have to inquire about iron infusions. I have read on here that the neuro issues (tingling) and joint pain can take some time to improve. The iron pills will not do you much good if you have intestinal damage because you are not absorbing them properly. My small bowel damage has healed and I am absorbing iron now where I wasn't before. Also try and find out what your other vitamin and mineral levels are. Alot of celiacs have deficiencies in vitamins D, K, & B12 (low related to neuro issues). I am sure I'm missing something so hopefully someone else will chime in.

Carin3 Rookie

Thanks for responding. Here is what my biopsy said. The duodenal biopsy in dark print says features suggestive of Marsh Type 2 Celiac Disease. Below this it says. Small bowel mucosa showing minimal loss of the villous structures(mild blunted villi); increased density of intraepithelial lymphocytes; and hyperplasia of the crypts. Marked increase i intraepithelial lymphocytes of superficial villous epithellum identified by CD3 stain (greater than 40/100 epithelial cells). Correlation with clinical findings including celiac sprue serology is suggested. So...does that mean anything to anybody?? After finding that out he ordered the blood work. He did a TTG IgA and Iga. My TTG IgA was <3 (and it says <5 is negative). My IgA was 324 (and it says normal is 81-463). Now I am looking at the other blood work I have had done in the past. My Hgb 10.0; Hct 31.4; MCV 67.3; MCH 21.5; MCHC 31.0; RDW 16.2. My iron level was 10 (normal 40-150); iron binding capacity 415 (normal 255-450); % iron saturation 2.4 (normal is 20-55). Ferritin was 13 (10-291 is normal.

Roda Rising Star
Thanks for responding. Here is what my biopsy said. The duodenal biopsy in dark print says features suggestive of Marsh Type 2 Celiac Disease. Below this it says. Small bowel mucosa showing minimal loss of the villous structures(mild blunted villi); increased density of intraepithelial lymphocytes; and hyperplasia of the crypts. Marked increase i intraepithelial lymphocytes of superficial villous epithellum identified by CD3 stain (greater than 40/100 epithelial cells). Correlation with clinical findings including celiac sprue serology is suggested. So...does that mean anything to anybody?? After finding that out he ordered the blood work. He did a TTG IgA and Iga. My TTG IgA was <3 (and it says <5 is negative). My IgA was 324 (and it says normal is 81-463). Now I am looking at the other blood work I have had done in the past. My Hgb 10.0; Hct 31.4; MCV 67.3; MCH 21.5; MCHC 31.0; RDW 16.2. My iron level was 10 (normal 40-150); iron binding capacity 415 (normal 255-450); % iron saturation 2.4 (normal is 20-55). Ferritin was 13 (10-291 is normal.

From what I can assume from your biopsy report you have celiac. You probably are going to be a biopsy proven with negative blood work celiac. You really need to check out your other vitamin/minerals. I was very vitamin D deficient and I have been taking rx vitain D for it since Jan. You need to go gluten free and find another GI doc.

ErnstM Newbie
Thanks for responding. Here is what my biopsy said. The duodenal biopsy in dark print says features suggestive of Marsh Type 2 Celiac Disease. Below this it says. Small bowel mucosa showing minimal loss of the villous structures(mild blunted villi); increased density of intraepithelial lymphocytes; and hyperplasia of the crypts. Marked increase i intraepithelial lymphocytes of superficial villous epithellum identified by CD3 stain (greater than 40/100 epithelial cells). Correlation with clinical findings including celiac sprue serology is suggested. So...does that mean anything to anybody?? After finding that out he ordered the blood work. He did a TTG IgA and Iga. My TTG IgA was <3 (and it says <5 is negative). My IgA was 324 (and it says normal is 81-463). Now I am looking at the other blood work I have had done in the past. My Hgb 10.0; Hct 31.4; MCV 67.3; MCH 21.5; MCHC 31.0; RDW 16.2. My iron level was 10 (normal 40-150); iron binding capacity 415 (normal 255-450); % iron saturation 2.4 (normal is 20-55). Ferritin was 13 (10-291 is normal.

Thanks for sharing all that... I'm new to this too and so eager to learn. My iga comes back negative too, and I don't know if the GI will even allow me a biopsy with the negative results. I am going to beg for one because I am having mixed response to the diet too. I thought it made a big difference, but I am miserable tonight, and almost positive that I didn't have any gluten today or yesterday... well a tiny bit yesterday. My ferretin level is 5! Are you considering getting any of the genetic tests done? Michelle

  • 1 month later...
Carin3 Rookie
Hi! Thanks for reading this. This is my first time on here. I am 34 years old and have 3 young children(3,4 and 6). I have had iron deficiency anemia for years. Iron pills don't really help. I finally went to a hematologist who started me on prescription iron and sent me for a GI consult. He did a endoscopy and colonoscopy. I was told everything looked fine. Luckily I went back in for the follow up and the biopsy for the endoscopy said findings suggestive of Type 2 celiac disease. I was surprised b/c this had never been mentioned before. The GI doctor said I didn't need to worry about a gluten free diet if I could control my anemia with iron pills and he sent me off for some blood test related to celiac. I knew a little about Celiac and researched more once I left his office. I was surprised that some of the symptoms I have gone to the doctors about over the years could actually be related to celiac. I have frequent joint pain (rheumatoid arthritis was ruled out), tingling in my hands and feet, headaches, fatigue, frequent cankor sores, anemia etc. I do have some mild abdominal cramping and gassiness but nothing horrible. Otherwise I dont really have any other GI symptoms. So here is the catch. My blood work came back negative but remember the biopsy result said suggestive of Type 2 celiac. I rarely read about this happening and don't know what to do. My GI said he doubted it was celiac (but I don't have the highest confidence in him after the above comments) however he did send my biopsy up to Yale to be read by someone up there. My joint pain and tingling seems to be getting worse and I am sick of being tired all the time. I have not heard back from Yale yet. I decided to go gluten-free one week ago to see if I notice a difference. I told my husband that the cramping and gassiness has all but disappeared everything else is still the same. But I dont know if those have gotten better b/c I am eating gluten-free or b/c I am probably eating a little healthier too. Anyway, would love some thoughts on my test results!! Thanks for taking the time to read this long post.

UPDATE: JUST WANTED TO LET YOU KNOW THAT THE YALE BIOPSY CAME BACK SAYING MILD CELIAC?? So I guess with two different people looking at the biopsy and saying celiac although my bloodwork was negative means that I have Celiac correct? I have been gluten-free since Nov 2nd and my GI symptoms have gone away (although they werent bad to begin with). I still have the tingling, joint pain,tiredness and iron deficiency anemia but if I understand correctly that can take awhile to go away. This doctor was still telling me I didnt need to go gluten-free since it was mild and my anemia was being controlled with iron pills!! I then told him I got a IV iron transfusion a couple weeks ago b/c my numbers keep dropping on oral iron. Then he said well I guess you should go gluten-free...not impressed with him. So two more things...someone suggested I should get other labs test (vitamin D, B12,thyroid etc) Should I go to my PCP and get that done? Also I have three kids 3,4, and 6. When should I get them tested or should I? I hate to get blood work drawn on them when mine was negative. Wanted some opinions. Or should I do genetic testing? Dont know which way to go there. Thanks again!! I appreciate all the help. It has been a lot of information to take (about celiac and gluten-free diet) in over the last 2 months but this website has been a HUGE help!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
UPDATE: JUST WANTED TO LET YOU KNOW THAT THE YALE BIOPSY CAME BACK SAYING MILD CELIAC?? So I guess with two different people looking at the biopsy and saying celiac although my bloodwork was negative means that I have Celiac correct?

Correct. You are one of us. You don't really need to test furthur, IMHO. There are some doctors who think the gluten free diet is a fate worse than death, so to speak, and don't want to diagnose until the villi are completely destroyed. Some will go so far as to say to keep eating gluten and then come back in a year and see if the damage has gotten more severe. Mild means that the area they biopsied was likely lower on the Marsh scale. It is great you got diagnosed when the damage wasn't too severe as it may make healing a faster process.

As far as the kids go, testing in kids younger than 4 is even more likely to show a false negative than in adults. How are the kids doing? Have they fallen on their growth chart percentiles since birth? Do any seem to want to eat gluten foods in exclusion of all else? Any behavior or learning issues? Skin issues? Tummy troubles? If they are not symptomatic in areas where celiac is better aknowledged they test kids at 4 and again at puberty. Or whenever they start showing symptoms.

  • 2 years later...
maa61 Newbie

I had something similar diagnosed recently but just found out. Being treated for some other issues. Did they ever run any autoimmune bloodwork. I think you mentioned mouth ulcers or something with your mouth. I had a sore raw throat since July. They ran several autoimmune tests one being ANA which turned up positive. I was anemic as well. This test was for Lupus. Look up Lupus and see if that corresponds with your symptoms. Also the dr prescribed an antiflammatory (steroid) and that helped a lot. I feel your frustration so I was just curious if your doctors had looked into the ANA test or any other autoimmune tests. Good luck to you.

kareng Grand Master

I had something similar diagnosed recently but just found out. Being treated for some other issues. Did they ever run any autoimmune bloodwork. I think you mentioned mouth ulcers or something with your mouth. I had a sore raw throat since July. They ran several autoimmune tests one being ANA which turned up positive. I was anemic as well. This test was for Lupus. Look up Lupus and see if that corresponds with your symptoms. Also the dr prescribed an antiflammatory (steroid) and that helped a lot. I feel your frustration so I was just curious if your doctors had looked into the ANA test or any other autoimmune tests. Good luck to you.

FYI. The original post was 3 years ago. I don't think she has been on the forum lately.

maa61 Newbie

Thank you for bringing that to my attention. Didn't even notice the year. I am still in the process of recuperating myself (thyroidectomy, diagnosis of lupus, and lab results suggestive of celiac sprue all in the last month) and when I did my search this forum came up. I hope she got answers and is doing better. Thanks again and take care. :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,430
    • Most Online (within 30 mins)
      7,748

    Court23
    Newest Member
    Court23
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mnofsinger
      There was an old thread from 2011 that I came across but has been archived and I could not reply to it. I would like to reopen this discussion but really dive into a potential connection for a early "warning sign" for undiagnosed celiac people. Let me give some back story. I was diagnosed with Celiac disease in June of 2023. How long I had it before? I can't say for certain, because my wife and I had been on and off keto diets, which naturally I would cut out gluten containing food. However, there was an instance I went into the ER about 4 years ago for potential appendicitis, but that was ruled out as "nothing". Looking back it would be the pains in the abdomen from being "glutened".  Prior to being diagnosed I would always say our food needed less salt because it tasted to salty. My wife would always point out, "No, it could use more". Most people around me would say it's not too salty, and I would chalk it up to having a sensitivity to salty foods. I did not make this correlation until after my bloodwork had came back to normal range after eating a gluten free diet. In the span of four months I brought my tissue transglutaminase IgA results from a 45 down to a 4. After that, I did not go out of my way to focus on was my food "too salty" or not, I just never really mentioned that the food I was eating was too salty. In fact, I would find myself adding salt to foods. It wasn't until I had been glutened about 13 months into my gluten free diet, that the few days afterward I made a comment "This is too salty". As soon as those words left my mouth, I was like "Wait a second!", and said to my wife "what if all this time I thought the food was too salty was because of eating gluten?". Now, I know everyone's body reacts differently to to celiac disease whether someone is asymptomatic or if they have symptoms what symptoms do they have. I'm not saying I'm right, but I would be curious to know other's experiences and ways we could help other undiagnosed people get the proper medical treatment they need, by common early warning signs. So, on this old thread:   Some people explained the change was after, but I would be curious to know your experience! 1. My question(s) to the ones that experienced this after a gluten free diet, was it because you other more serious symptoms were occupying your mind while eating gluten that you never really noticed the "too salty" experience? 2. Is it possible that you had been accidentally glutened during your gluten free transition that spiked this reaction?       (Some context to this one: The reason I was able to get my numbers down so low in the 4 months after being diagnosed, was I went "over the top", We stopped going out to eat, we through out all our food, we threw out ALL of our cookwear/utensils/glasses/plates/cutting boards and I do mean EVERYTHING, and started with new, because I didn't want to be hindered by "hidden gluten". My wife tells me I have the tendency to go to the extremes 😄 ) Hope everyone finds this topic interesting and fun at the same time. So please, tell me your experience on this subject!
    • Scott Adams
      Since your symptoms are so severe and obvious, I can't really think of a compelling reason to get the confirmation, especially when weighed against some of the downsides of having an official diagnosis that are mentioned in the thread I shared. For people in the UK and other countries where their health care system offers food subsidies for those with celiac disease it does make sense--and most of those counties also have universal healthcare where the diagnosis would not be a factor.
    • Jula
      Hi Scott, Thanks for the great information. The "negotiation" is my euphemism for the discussion with the nurse at my doc's clinic and eventually, the doctor. It took place because they said I would have to be on gluten again for 6 weeks prior to the upper endoscopy/biopsy. As I stated previously, I am highly reactive to tiny amounts of gluten and the impact lasts for weeks and can be debilitating. The first time I had COVID I thought I had been contaminated at a friend's house because I had all those symptoms (extreme joint pain, muscle pain, exhaustion/fatigue, coughing, worsening asthma attacks, more) but no fever. It turned out to be COVID and the fever came a day after the initial group of symptoms. Granted, not all contaminations are the same in the intensity of their impact, but to have gluten every day for 6 weeks --- I know I could not handle it and as I'm self-employed I could not afford to work minimally for much of that time. Hence, the discussion/negotiation/whatever you want to call it. They asked me how long I thought I could tolerate it, I said maybe a week. Then I was contaminated at a restaurant and was reminded of the impact for the following 2.5 weeks and I started getting anxious about doing this to myself for such a long time, wondering how long it would last and worrying that the dermatitis herpetiformas would come back which took more than a year of excruciating itching to clear up completely. So, that's the back story. Neither the doc or the nurse mentioned 2 weeks, but it doesn't matter at this point. I don't think its worth it even for the one week, especially if as you say they may not be able to gather any information from that, although I don't know how that would be true being that my immune system knows with less than a crumb and gets busy attacking my small bowel. I can't imagine that wouldn't show up in there, but I guess that could be the case, so again, not worth starting the new year feeling like crap and unable to get the money I need to pay my bills/survive in the bigger picture. The blood work that was used for my initial diagnosis was done after I had been eating gluten my entire life, so well beyond the gluten challenge. Thank you, though, for taking the time to share the resources and your perspective!
    • Scott Adams
      New research: Glyphosate exposure exacerbates neuroinflammation and Alzheimer’s disease-like pathology despite a 6-month recovery period in mice https://jneuroinflammation.biomedcentral.com/articles/10.1186/s12974-024-03290-6 
    • Scott Adams
      You can buy gluten-free cheese sauce powder on Amazon, or you can buy gluten-free macaroni and cheese, which include a cheese sauce packet. Many alfredo sauces in the jar are also gluten-free.
×
×
  • Create New...