[Carin3]

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.

[mushroom]

Carin3, on Nov 10 2009, 09:16 PM, said:

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]

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]

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]

Carin3, on Nov 10 2009, 04:39 PM, said:

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]

Carin3, on Nov 10 2009, 02:39 PM, said:

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

[Carin3]

Carin3, on Nov 10 2009, 03:16 AM, said:

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!!

[ravenwoodglass]

Carin3, on Dec 22 2009, 01:34 AM, said:

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.