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TJ060306

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About TJ060306

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  1. Thanks all for the responses....I could have caesin intolerence but I am in denial of to try dairy free ( I LOVE cheese.. :P ) I did go see an allergist whom did the food scratch testing which came back negative for all so I did the food patch testing which also came back negative...I was basically told that we may never know what causes the EE..along with "I dont think you have both celiac and EE that is rare" so I just take my flovent and hope it doesnt get worse? The only sign of EE I had was a tight feeling in my throat which I have not had since going gluten free..so I dont know if was the gluten that was causing it or what..I wont know until I have a follow up endoscopy..

    I am going to beth isreal in boston..they are supossed to have a good celiac clinic..hopefully I will get some answers and a knowledgable doctor..I got scared with my last bx it looked to me like cell changes I thought I was getting cancer or something!!!! So I want to get this gi issue under control and cause no more damage...

    I have a hard time with gluten free..I am always on the go so getting used to not eating out...it is a very hard change..I go to places I think are gluten free but then I think I get sick..so I dont know if I am completly gluten free....it is a uphill battle I am learning day by day...I give credit to all of you who does this and do it well...

    but thank you all!


  2. I have had a couple of procedures over the past year or so. My GI doc is sort of old school. I orignally had a endoscopy because of gerd symtoms (symptoms). The first bx was positive for celiac and EOE. Doctor did celiac panel negative. The only numbers that were off were low vit D and low iron. So he gave me meds for gerd and EOE and sent me on my way.Well I was still having bloating and constapation isssues so a colonoscopy we did. That looked comeplete normal. But he said the bx were microscopic colitits. I dont think thats what the pathology says. So I was given another med and sent on my way. It didnt work. So another endo and it didnt come back as celiac this time but still EOE. So he said it was ibs and EOE and was told to manage it. Well that was nov 10' flash forward to nov 11 and the same issues where still happening. (constipation, bloating, gross smelling flatuence and stools, muscusy stools, and intermitten diarhhea like once a week). So another endo we went in nov 11 and again this time positive for celiac EOE. So the doc said well maybe it is celaic try gluten free. He did a blood test again neg for celiac but again low iron. I have been trying to do gluten free but i think i keep get glutened some how. I almost dont feel any better and its been 2 months. I think it may be time for another colonscopy but I am in nursing school and can not do one until july. I sometimes wonder if maybe it is chrons i have. Any input would be greatly appricated! I am pretty sure I have celiac but the way the doc is so like well lets see how a gluten-free diet works, makes me question is it? I am in the process of waiting for another gi doc.

    Thanks

    Janelle

    10/25/10

    Duodenal

    biopsies: Duodenal

    mucosa with villous blunting and numerous intraepithelial lymphocytes.

    Gastric

    Biopsies: Mild to moderate chronic gastritis.

    Esophageal biopsies: Eosinophilic esophagitis.

    12/22/10 Colon

    Terminal ileum biopsies: No diagnostic abnormalities recognized.

    Random colon biopsies: Mild acute and chronic colitis with focal cryptitis.

    1/24/11

    Duodenal Biopsies: Focal Brunner's gland hyperplasia and mild chronic duodenitis.

    Esophageal biospies: Esophageal squamous mucosa with subacute and chronic inflammation.

    12/19/11

    Duodenal Biospies: Fragments of duodenal mucosa with areas of villous blunting, intraepithelial lymphocytes, along with actue and chronic duodenitis.

    Gastric biopsies: Fragments of gastric fundic and antral mucosa with chronic inflammation along with areas of regenerative/reactive glandular atypia.

    Esophageal biopsies: Fragments of esophageal squamous mucosa with basal layer hyperplasia and slight subacute and moderate chronic inflammation. .


  3. I have been having issues for about two years now. I had a postive bx in Oct 10 but since my bloodwork was negative he said no I didnt have it. Well a year later and still GI issues I had another positive bx so he said today I have celiac. So much to learn and with a 3 and 4 year old and in nursing school it is going to be a stressful couple of months transtioning into this gluten free world. Just saying hi and I am sure I will be posting alot now! :lol:


  4. Hi I had a endoscopy on 12/21 and I got the results on Friday. I have had one positive and one negative biospy in the past year and neg bloodwork. These results I think are another positive. I was just looking for someone elses input as I think I have celiac and I really wish my doc would see it too, but since my bloodwork is negative he doesnt want to see it.

    Part 1:Duodenal Biospies:

    Fragments of duodenal mucosa with areas of villious blunting, intraepithelial lymphocytes, along with acute and chronic duodenitis.

    Note: Although nonspecific, these findings may be associated with celiac diease.

    Part 2: Gastric biospies:

    Fragments of gastric fundic and antral muscosa with chronic inflammation along with areas of regenerative/reactive glandular atypia.

    Note: No organisms suggestive of H. pylori seen on Alcian yellow stain.

    Part 3: Esophageal biospies:

    Fragments of esophageal squamous mucosa with basal layer hyperplasia and slight subacute and moderate chronic inflammation.

    Note: No obvious intestinal metaplasia seen on H E or Alcian blue stains. There are between 5 and 10 eosinophils per selected high power field. Clinical and endoscopic correlation recommended for evalutaion of eosinophilic esophagitis.


  5. Hi I had a positive biospy in oct 10 but my bloodtest were negative so the GI said it was prob not likley celiac. I was still have probs going the bath C&D so he did a colonoscopy and that came back with microscopic colitis. So I told him though that I was still having problems so he said well microscopic colitis could from celiac lets do another endoscopy. So that has brought me to Last monday and I have another endoscopy done. I went today for the results and it doesnt show villious blunting like my previous one did. So now my doc said I most likly dont have celiac that whatever cause the villious blunting before is going away. I told him I dont think so becuase I still fell like crap all the time. I went gluten free for 4 days and I ate gluten on fri and I felt like crap all weekend he said well maybe thats in your head feeling better. He treated me for microscopic coliots and told me to come back in 3 weeks. I asked well what will happen if I am not better hes like I dont know lets wait to see if it helps....

    So my question is can something else cause villious blunting? Could maybe microscpotic colitis cause GI problems?


  6. Hi all...

    I went for a endoscopy in Oct due to trouble eating, once I ate something it felt like it was stuck in my throat. So I along with my GI went in thinking maybe GERD at most.Well once he was done he said he thought EE and gastritis he gave me meds and sent me on my way. Well soon after I had endo done I started having problems with constpitation, big D, and massive bloating feeling. In hinesight I should have maybe told him that I have had blood in my stools and they always float, I just thought it was because I dont eat healthy (I am 60 lbs overweight).

    This is what his report right after the prodcedure (before any results)

    The patient was kept NPO and prepared with intraventous fentanyl and Versed. The olympus scope was passed into her esophagus in the left lateral postion without any difficulty. She was found to have mild furrowing of the esophagus and some thickening of esophageal muscosa mostly in the upper esohagel area. Multiple esophageal biopies were taken to rule out eosinophilic esophagitis. She also had a small hitaus hernia and incompetent lower esophageal sphincter with free reflux. No evidence of Barrett's was seen. The stomach showed erosive antral gastritis. Biopsies were taken to rule out Helicobacter pylori and to rule out eosinophilic gastritis. Duodenal bulb showed acute duodenitis.

    Then the biopsy report

    Part 1: duodenal biopies: Duodenal mucosa with villious blunting and increased intraepitihelial lymphocytes

    Note: Althought non specific, these findings may represent Celiac Diease. Clincal, endoscopic and serologic correlation advised.

    Part 2: Gastric biopies: Mild to moderate chronic gastritis.

    Note: No organisms suggestive of H. pylori seen on Alcian yellow stain.

    Part 3: Esophageal biopies: Eosinophilic esophagtis.

    Note: there are between 10-20 eosinophils per selected HPF. No intesinal metaplasia seen on H&E or Alcian blue stains.

    So then when I went back for a month follow up he told me I only had EE and gastritis. That maybe I could have celiac but wait to the blood work comes back. If it comes back negative we will do a repeat endo in a couple of months. Well they did bloodwork which was negative and I did not go gluten free before the bloodwork but for the month before the blood I was so bloated that I didnt want to eat so I wasnt eating much.

    Results of the bloodwork

    Tissue transglutaminase antibody IGA: <3 (<5 negative, 5-8 equivocal, >8 postive

    Immunoglobulin A: 133 (81-463)

    Gliadin Antibody (IGA): 4 (<11 negative, 11-17 equivocal, >17 postive

    So my question is, what do you think? I dont know what to think I would have never thought celiac disease before this but now I think I do. I should also mention for the past 2 years I have seen a rhemoy doc because of other issues. Which are iron defencity animena, hair loss, muscle/joint pain, and a slight postive ANA. I also am taken zolaft for anixety. Autoimmue dieases run in my family(all first genration girl cousins on maternal side all have autoimmune dieases).


  7. Hi all...

    I went for a endoscopy in Oct due to trouble eating, once I ate something it felt like it was stuck in my throat. So I along with my GI went in thinking maybe GERD at most.Well once he was done he said he thought EE and gastritis he gave me meds and sent me on my way. Well soon after I had endo done I started having problems with constpitation, big D, and massive bloating feeling. In hinesight I should have maybe told him that I have had blood in my stools and they always float, I just thought it was because I dont eat healthy (I am 60 lbs overweight).

    This is what his report right after the prodcedure (before any results)

    The patient was kept NPO and prepared with intraventous fentanyl and Versed. The olympus scope was passed into her esophagus in the left lateral postion without any difficulty. She was found to have mild furrowing of the esophagus and some thickening of esophageal muscosa mostly in the upper esohagel area. Multiple esophageal biopies were taken to rule out eosinophilic esophagitis. She also had a small hitaus hernia and incompetent lower esophageal sphincter with free reflux. No evidence of Barrett's was seen. The stomach showed erosive antral gastritis. Biopsies were taken to rule out Helicobacter pylori and to rule out eosinophilic gastritis. Duodenal bulb showed acute duodenitis.

    Then the biopsy report

    Part 1: duodenal biopies: Duodenal mucosa with villious blunting and increased intraepitihelial lymphocytes

    Note: Althought non specific, these findings may represent Celiac Diease. Clincal, endoscopic and serologic correlation advised.

    Part 2: Gastric biopies: Mild to moderate chronic gastritis.

    Note: No organisms suggestive of H. pylori seen on Alcian yellow stain.

    Part 3: Esophageal biopies: Eosinophilic esophagtis.

    Note: there are between 10-20 eosinophils per selected HPF. No intesinal metaplasia seen on H&E or Alcian blue stains.

    So then when I went back for a month follow up he told me I only had EE and gastritis. That maybe I could have celiac but wait to the blood work comes back. If it comes back negative we will do a repeat endo in a couple of months. Well they did bloodwork which was negative and I did not go gluten free before the bloodwork but for the month before the blood I was so bloated that I didnt want to eat so I wasnt eating much.

    Results of the bloodwork

    Tissue transglutaminase antibody IGA: <3 (<5 negative, 5-8 equivocal, >8 postive

    Immunoglobulin A: 133 (81-463)

    Gliadin Antibody (IGA): 4 (<11 negative, 11-17 equivocal, >17 postive

    So my question is, what do you think? :) I dont know what to think I would have never thought celiac disease before this but now I think I do. I should also mention for the past 2 years I have seen a rhemoy doc because of other issues. Which are iron defencity animena, hair loss, muscle/joint pain, and a slight postive ANA. I also am taken zolaft for anixety. Autoimmue dieases run in my family(all first genration girl cousins on maternal side all have autoimmune dieases).


  8. I want to get one of these done and I dont have the $369 or the $250 right now to spend on the full panel tests. So I was thinking of doing either the Gluten Sensitivity or the Sensitivity to Tissue Transglutaminase, which one would be better to help me determine if gluten is affecting her. Her blood work came back negative and the biopies are negative. The only thing on her biopies that was not normal to my eye was this:

    Esophagus at 15cm:

    Spuamous epithelium with dilated congested lymphatic channel.

    Operative Findings

    LES at 23 cm. EGD Grossly nl.

    Which the GI said was fine.

    I want to go Gluten Free but I want to get all the testing I can get done while she is still eating it.

    Any input on the EntroLab tests and which one would be best for me to do without spending my husbands truck payment. :P

    Thanks

    Janelle


  9. My daughter had an endoscopy on 1/12 and I recieved her results today. I spoke to the doctor which he said everthing looked fine and I should stop her prevacid becuase he didnt see any signs of acid reflux or any problems for that matter. The only results on the final report I dont understand is this one:

    Esophagus at 15cm:

    Spuamous epithelium with dilated congested lymphatic channel.

    Operative Findings

    LES at 23 cm. EGD Grossly nl.

    I dont know what that means now it could be completely normal but I would jsut like some other input. I really thought daughter had celiac but her blood and biopies say otherwise. I am debating on wheter or not tojust try to GFD like I orignally was untill I got these results. Also on the 4 biopies they took all it says is withinin normal limits nothing else. Could there be more to it and the pathioglist just didnt write it down?

    Thanks

    Janelle


  10. I am wanted to start my daughter tomorrow on a GFD. Well I thought it was a no brainer to have the whole household gluten-free since she is only 21 months I thought it would be easier in avoiding CC for her. Well I have now done some more research and I see a lot of people have some cons. Like not being able to be tempted but none gluten-free free food. As well as learn to live in a non Gluten free world. I dont know which would be better now. I think having a gluten-free home would be better since our other child is only 7 months so he wouldnt know the difference if we stuck to it when he gets older.

    What are your thoughts on this? Do you just do Gluten Free for the affected person or does your whole family do it? Or do you try to meet in the middle with a little bit of both. (Which I am afraid I will CC this way as well)

    Also if you have teflon pans and their scratched did you buy new ones?

    Thanks

    Janelle


  11. Janelle...I have to add my 2cents.. not necessarily celiac related

    Might want to follow up with this, preferrably with an immunologist who knows about hypogammaglobulina..You can get good doc referrals from http://www.primaryimmune.org/ if you call/email them., (they have a forum too) ...I am not familiar with pediatric ranges, they are lower than adults because once they stop getting yours from the placenta they have to start producing on their own and can have transient phases of low values, so this could come up and be nothing to worry about. Some subclasses like IgG2 may not be fully developed until after 8-10yrs.

    But..your DD is 50% below range, IgG2 (the most common deficiency in kids) makes up only about 20%, and she has too many symptoms to ignore..that are VERY common for immunodeficiency. You should have her total IgA count if they did celiac tests. See if that is low/ below range too, that addition would also be a indicator of a problem here. Because of her age testing will be harder, but they should check IgA, IgD, IgE, IgM and subclasses IgG1, IgG2, IgG3, IgG4.

    The only number on her celiac test is Tissue Transglutaminase Antibody and that was .7 (0.0-10.0)

    How high are her platelets- have they just been trending up and now over range or was it a one time #? a little elevation can be chronic inflammation/anemia...alot high is NOT good. Point that out to doc when you call. How's the WBC? any low? high?

    3 months 608 (140-440)

    11 months 414 (140-440)

    20 months 514 (130-400) Different lab than the other 2

    Her WBC came back fine the only thing that was 'different' is that her red blood cells where small and flat which the pedi attrucbed to the iron defenciy ( I dont know if that could me anything else)

    The only reason I am nervouse is becuase auto immune dieases run in my mothers side. My cousin has a rare auto immmune diease Mixed Connection Tissue Diease, my other cousin has one they just dont know which one yet. I have an aunt an uncle wiht RA. I am just scared there is some underlining auto immune disorder and noone thinks that. Is there a test to see if she has an immune problem?

    Other good info @ Jeffrey Modell Foundation / national primary immune defficiency.

    the domain name looks weird but its the right place ->http://www.info4pi.org/

    I'm sure i worried you ..i'm very sorry, I don't have perfect information & I don't understand these problems for young children - please keep that in mind.

    Thank you for your input


  12. I am going to go Gluten-Free Monday after my daughters endoscopy (see post below if you like). After reading stories on here and researching I think it will be a good idea to try. Even if the endoscopy comes back negative. I am going to have the whole family go gluten free just to make sure we have no problems with CC or her acidentlly getting something with Gluten.

    My question is where do I begin? lol Is Gluten written as an ingerident? Or is there certin things I need to look for?

    It is going to be hard being she is a toddler and she now eats limited things but I think it will help her. I also read on her finger paints as well as play-doh have gluten is there anything else I need to watch out for with a toddler?

    Thanks and help would be appricated.


  13. Well I hope I am writing this in the right spot, if not please let me know.

    I am despret my daughter is almost 21 months has had chronic constpation since she was a newborn. She also doesn't like to eat, at all. To start off when my daughter was 3 weeks I saw a huge thing of bright blood, after trial and error she ended up on Neocate formula for a milk protien allergy. She also had rice ceral in her bottle for acid reflux. She was also medicated with previacid. She still was constapatied on the Neocate her GI told me to try milk of mag which if i was faithful in giving it to her it would make her poops not little pebbles. But I didnt and still dont agree having to give my daughter something to make her poops 'normal'. Her poops (sorry if TMI) have always been light pale brown little pebbles smushed into a ball. Sometimes just one hard ball. Now she goes everyday sometimes twice but it always still looks like that unless I give her Milk of Mag or Lactulose. Her poop smells awful like I know it isnt supossed to smell like roses but it is just foul not a norm poop smell. Sorry again if TMI. She also has had major gas issues as well. Ok now onto her not eating issues. Well she would always gag on stage 3 baby foods with chunks in it. She didnt put something in her month and eat/suck on it until her first birthday. This I know sounds like GERD, which she was taken off the prevacid at 11 months we thought she was doing fine. At the time I never thought that was what causing her not to eat. So she didnt eat untill 12 months she is now almost 21 months and she practically starves herself. Now shes not under weight because up until she got croup last week she had 18-24oz milk that kept her going. She now wont take her bottle therefore now she has lost a pound in 2 weeks and she still isnt eating. Which everyone(GI,Pedi,OT) all thought once the bottle was gone she would eat. Well shes not. She also has had server issues wiht her diaper area. She has evey kind of rash down there imaginable plus she was dianosged with excema and psorisis. She also gets sick all the time. She has had a cold/ear infection/cough/croup/runny nose thing going one since like the beginning of Oct. She seems to be getting over something then she comes down with something else. She is very pale, bags under her eyes and exshusted all the time now. She was dianosed boardline iron defeincy aneamia. Which the pedi said was from her drinking to much milk but when we cut back on the milk in Oct her iron went from 75 to 39. I would think if I was cutting back the milk the iron would either maintain or go up if it was from the calcium from the milk not get lower. She is also a wreck when she is hungry, but she still doesnt eat. She is angry and agressive just not normal toddler anger when she has these 'meltdowns'. She is going for a endoscopy next week because of the not eating but her pedi and GI both think there isnt anything wrong. They think it is just normal toddler behaivor the not eating and the' constaption is just something that happens to some kids'.

    She has had blood work done at 3, 11, 18, 20 months all came back normal except the lower iron also high platelets. She also had the celiac blood test done which came back negative, well duh it would she doesnt eat enough gluten to show up. But the TGA(i think) came back a number .07 which is well with the normal range. She also had some allgery testing done all came back fine except egg came back equivocal which again her pedi said was norm. But her Immunoglobulin G was low 186 (382-1026).

    I know it sounds maybe caesin related but she was tested for milk and it back negative. I know she still could have a intlorance. But she was constiaped on the Neocate which is completely milk free.

    Anyone have similar exprecices or any advice. I dont know what to do any more none of the docs I see thinks theres anything wrong. But I am sorry there is a reason why a 20 month will starve themselve and dehaydrate themsleves.

    Sorry it is really long. I have been lurking on this site now for awhile I finally decied to post hoping maybe someone had a simialr experence. But like I said she will have the endoscope next week and hopefully we will have answers. I also dont know how to spell sorry as well for that.

    Janelle