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Enterolabs Results,celiac Vs G Intolerant

janu

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janu Rookie
janu
Posted

:( O.K. I'm in tears now. Just got results from Enterolabs, I have gluten intolerance genes but not celiac genes but do have moderate malabsorption of 866 and IgA 20 and Ttg 21 after 6 months of diligent gluten-free diet. So do I have Celiac or Gluten Intolerance and what the _ _ _ _ difference does it make?!! Where do I get help with nutritional advice etc.? I live in a small town and no one in the area seems to know anything about all this. Even the medical community doesn't seem to understand. My doctor said"well it's not life threatening so if you want to eat a piece of birthday cake and ice cream, go ahead, just don't do it all the time." HELP. Two of my daughters and one granddaughter have all been diagnosed with the blood test. My granddaughter was born 14 weeks early and only weighed 20 ounces but is doing pretty good now. She's 7 and still small but has no physical limitations or learning problems. Where can we all find help? I'm in Central Oregon and none of the doctors I've seen except my chiropractor seem to know what to do.

Thanks for any help anyone can offer.

Jan

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skbird Contributor
skbird
Posted

Hi Jan -

I'm sorry to hear that you don't have any support where you are. That is really unfortunate. Hopefully, you do know that you can't have a piece of birthday cake every now and then... what crummy advice for a doctor to give! Yikes!

Have you been reading through here long? There is so much good information here that should really help you out. I have learned most of what I know about gluten intolerance from this and a couple of other message boards. I have also read through some books but found I didn't learn all that much more from them than what I read online. My doctor didn't make any suggestions at all. In fact, he didn't diagnose me, he just recommended the gluten free diet for 6 months and then see how I feel.

I went through EnteroLabs about 5 months after going gluten free and found I didn't have any malabsorption (67) and that my IGA was 9 and my Ttg was 7. I had many symptoms resolve right away, too. I don't have either of the Celiac genes, but two gluten intolerance ones (see my signature). I don't think it makes a difference what they call it, if you are sick and get better on a gluten free diet, then that's what you have to do to be healthy.

You sound really frustrated and I don't blame you. There are books that can help you, maybe someone will post titles (I can't remember the ones I got, but haven't read them much because the info I found on the web was so helpful). I'll bet you are having malabsorption at this point because you are not aware of gluten sneaking in your diet which happens to all of us at some point, especially if we don't have support from other people. Sometimes I will think about eating something or buying a supplement and my husband will say, did you read the label? and I'll think gosh, by now that should be automatic, but every once in a while it's not (this past weekend we were at an Asian food store and I was looking at the Chinese meds when he said, you're not going to be able to tell what's in that - the ingredients are in Chinese! oops!)

I wish I could make suggestions for your area, but I'm in California and even where I am there is no support group or reputable gluten-knowlegeable doctor. Please know you are not alone and keep reading here, you will find help! :)

Take care

Stephanie

Corrine Rookie
Corrine
Posted

Hi Jan,

Go to the University of Maryland School of Medicineweb site and email Dr. Alessio Fasano, Center for Celiac Research with any questions. He will email you back. He may be able to point you in the right direction.

Rachel--24 Collaborator
Rachel--24
Posted

Hi Jan,

I dont have any advice for you because I'm in the same situation right now. Just got my Enterolab results last night and I too was in tears. Your antibodies are a little higher than mine but my malabsorption is the worst I've seen. Hadn't seen anything close to it till I saw your results. Heres my numbers:

Gluten Sensitivity Testing

Fecal Antigliadin IgA 16 Units (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

Microscopic Fecal Fat Score: 912 Units (Normal Range < 300 Units)

HLA-DQ Gene Molecular analysis: HLA-DQB1*0301, 0501

I'm confused about what this all means too. I've been on strict diet for 3 months before test. Were you feeling better on the diet? I had dramatic improvement at first but then began to be sick again. I don't know if its just gluten doing all this. It was almost a month ago that things started to get bad again. I hadnt changed anything in my diet. I did eat 2 packages of ground processed turkey which likely contained some gluten and during the same week I bought new lotion/hair products which all contained wheat germ oil. Since then I have not gotten back to feeling great again. I don't know if those small amounts could've gotten me this sick and malnourished or if something else is going on. Do you know if gluten sensitivity can cause malabsorption? I'm going to stay gluten-free but do you think we have to be extremely careful the same way a Celiac does as far as contamination and skin products and all that goes? If my problems really are due to gluten than I am one HIGHLY sensitive individual....I dont understand the difference between Celiac & sensitivity. Everyone says only Celiacs get damage in the intestines. If this is the case then what is causing our malabsorption??? I'm soooo confused.

-Rachel

Guest nini
Guest nini
Posted
. Everyone says only Celiacs get damage in the intestines. If this is the case then what is causing our malabsorption???  I'm soooo confused.

-Rachel

<{POST_SNAPBACK}>

I don't believe that is accurate. Gluten is a toxic grain period. Some of us are just way more sensitive to it. As far as the difference between Celiac and Gluten Intolerance? the only one I'm aware of is that Celiac is confirmed damage... Gluten Intolerance is just as reactive to gluten as celiac and the treatment is the same so why get hung up on semantics?

I tested positive for Celiac, but my daughter did not and she has all the classic symptoms and responded extremely well to the diet... so in her case, She is Gluten Intolerant, just maybe not Celiac YET. Whatever. It's still Celiac to me...

cgd Newbie
cgd
Posted

Hi and welcome. I'm sorry your doc doesn't seem to understand. You've come to the right place--people here definitely do! I agree with Nini and the others--if cutting out gluten makes you feel better, what does it matter what a test says? I agree with her also that gluten is probably toxic in general. I don't have a test but know that my sinus problems and headaches have diminished by 90%, and that alone is worth it. Hang in there!

janu Rookie
janu
Posted
  • Author
Hi Jan,

I dont have any advice for you because I'm in the same situation right now. Just got my Enterolab results last night and I too was in tears. Your antibodies are a little higher than mine but my malabsorption is the worst I've seen. Hadn't seen anything close to it till I saw your results. Heres my numbers:

Gluten Sensitivity Testing

Fecal Antigliadin IgA    16 Units    (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA    15 Units  (Normal Range <10 Units)

Microscopic Fecal Fat Score:  912 Units    (Normal Range < 300 Units)

HLA-DQ Gene Molecular analysis:  HLA-DQB1*0301, 0501

I'm confused about what this all means too. I've been on strict diet for 3 months before test.  Were you feeling better on the diet?  I had dramatic improvement at first but then began to be sick again. I don't know if its just gluten doing all this. It was almost a month ago that things started to get bad again. I hadnt changed anything in my diet. I did eat 2 packages of ground processed turkey which likely contained some gluten and during the same week I bought new lotion/hair products which all contained wheat germ oil. Since then I have not gotten back to feeling great again. I don't know if those small amounts could've gotten me this sick and malnourished or if something else is going on. Do you know if gluten sensitivity can cause malabsorption? I'm going to stay gluten-free but do you think we have to be extremely careful the same way a Celiac does as far as contamination and skin products and all that goes? If my problems really are due to gluten than I am one HIGHLY sensitive individual....I dont understand the difference between Celiac & sensitivity. Everyone says only Celiacs get damage in the intestines. If this is the case then what is causing our malabsorption???  I'm soooo confused.

-Rachel

<{POST_SNAPBACK}>

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janu Rookie
janu
Posted
  • Author
Hi Jan,

I dont have any advice for you because I'm in the same situation right now. Just got my Enterolab results last night and I too was in tears. Your antibodies are a little higher than mine but my malabsorption is the worst I've seen. Hadn't seen anything close to it till I saw your results. Heres my numbers:

Gluten Sensitivity Testing

Fecal Antigliadin IgA    16 Units    (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA    15 Units  (Normal Range <10 Units)

Microscopic Fecal Fat Score:  912 Units    (Normal Range < 300 Units)

HLA-DQ Gene Molecular analysis:  HLA-DQB1*0301, 0501

I'm confused about what this all means too. I've been on strict diet for 3 months before test.  Were you feeling better on the diet?  I had dramatic improvement at first but then began to be sick again. I don't know if its just gluten doing all this. It was almost a month ago that things started to get bad again. I hadnt changed anything in my diet. I did eat 2 packages of ground processed turkey which likely contained some gluten and during the same week I bought new lotion/hair products which all contained wheat germ oil. Since then I have not gotten back to feeling great again. I don't know if those small amounts could've gotten me this sick and malnourished or if something else is going on. Do you know if gluten sensitivity can cause malabsorption? I'm going to stay gluten-free but do you think we have to be extremely careful the same way a Celiac does as far as contamination and skin products and all that goes? If my problems really are due to gluten than I am one HIGHLY sensitive individual....I dont understand the difference between Celiac & sensitivity. Everyone says only Celiacs get damage in the intestines. If this is the case then what is causing our malabsorption???  I'm soooo confused.

-Rachel

<{POST_SNAPBACK}>

Rachel,

We sound like we should be buddies! I did get better right away then about 3 months into this I went downhill. Now I find out I should stay away from eggs, dairy, tomatoes, and peppers. I had to change all my beauty products including hair gel, hair color, makeup, soaps. I'm still looking for other sources of hidden gluten. I'm going to try e-mailing that doctor at U. of Maryland and see what he has to say. Good luck to you too. Let's keep in touch.

Jan

Rachel--24 Collaborator
Rachel--24
Posted

Janu,

Yeah...feel free to email me anytime. The email address I used to register is not mine...so you can send a personal message or email me at Sunshne24@aol.com.

I hope that doctor is able to help you. I'm in the Bay Area Ca...not exactly small town but I'm looking to get out of my HMO and find a real doctor who will be able to help me out more.

I already changed all my make-up, hair and skin products after my disaster with everything having wheat germ oil. Thats pretty much what clued me in on how much gluten is affecting me. Have you lost alot of weight due to the malabsorption? I lost 25 lbs. and since I went gluten-free I stopped losing but didnt gain either. I was only eating meat, fish and veggies. The past few days I started adding more gluten-free foods...cereals, corn tortillas, fruits, pasta and bread. I've already gained 5 lbs. but its not looking very healthy. I just look kinda pregnant with real skinny arms and legs...not too attractive. Oh well...I'll see how things go now that I'm truelly on the gluten-free diet. I cant afford to have "accidents" at this point. I really don't mind gluten-free food...I tried it out for a couple weeks last year so I'm pretty familiar with the brands and where to shop and everything like that. You said you're from a small town...hopefully there are some stores around you that carry gluten-free foods. I think most people feel like they have to give up everything when they start the diet but for me its the opposite cuz I'm actually adding foods in since I was on a strict Candida diet previously. My milk sensitivity test came back ok...the score was 9. I've been off dairy for 3 months so I dont know if the number is accurate. I will proceed with caution :unsure: . Other than that I'm not aware of other intolerances. Good luck finding someone in your area who can help you :)

-Rachel

Nevadan Contributor
Nevadan
Posted

Welcome to Purgatory. I know how you feel. My recent results from Enterolab were similar except for the malabsorption: Antgliadin IgA = 22 (Norm < 10), Antitissue Transglutaminase IgA = 17 (Norm < 10) Malabsorption = 84 (Norm <300), HLA-DQB1*0602*0602 (Serological equivalent = DQ1), anticasein (cow's milk) antibody IgA = 19 (Norm <10)

I had been gluten-free for only a couple of weeks when I sent in my samples. Since getting the results I've been trying to figure this all out, too. The one thing I'm learning is that based on today's knowledge, celiac is only the tip of the gluten iceberg. I found the book "Dangerous Grains" by Braly and Hoggan focused rather well on what they prefer to call non-celiac gulten sensitivity - lots of good information. Another source I found very helpful is "The Gluten File" accessible on the following website: Open Original Shared Link . This website also has a message board though not as user friendly as this one. It is focused more on neurological disease and gluten sensitivity.

I also found a reference (which I can not find again right now) that discussed gluten induced malabsorption without any discernable intestinal damage - I think they attributed it to some chemical blocking mechanism related to gluten.

Bottom line for now: It looks to me like having the non-celiac gluten sensitivity genes and continuing to consume gluten is as bad as being celiac - just different results. We are more likely to evidence our gluten problems with autoimmune diseases and neurological disease, so hang in there with the gluten-free diet - it's really not all that bad except for eating out - and keep following the research.

Being a retired physicist, I'm still somewhat skeptical regarding the Enterolab testing, particularly the malabsorption test, due to lack of peer review. But I think their gene test should be correct. Also I'm not sure if having the antibodies in the bowel definitely means they are in the bloodstream where they would do the most damage for us non-celiac inclined folks, but I'm still on a steep learning curve.

A little background on my health situation in case it helps:

I'm a 60 yr old male. I was diagnosed with osteophorisis 5 yrs ago after my much older brother was similarly diagnosed. I usually follow the mainstream news articles regarding osteo. A few months ago I read that celiac's should all be tested for osteo and decided that the inverse might be worthwhile also so I started reading up on celiac (didn't know anything about before). I found some of other symptoms that I've had for 10's of yrs described: bloat, gas, chronic constipation (docs all said eat more whole-grain cereal and breads!??), marginal anemia, and mild peripheral neuropathy (tingling toes and feet). So I decided to go gluten-free and see what happened, and within 48 hrs my gastro problems were gone for the first time since I can remember. That alone was enough to justify be gluten-free for me.

I hope to see some improvement in my marginal anemia within a yr or so, but don't know if I will be able to see an improvement in my osteo independent of my taking Fosamax which is definitely helping. From what I read the neurological problems take a long time to recover, if at all, but hopefully won't get any worse.

Hope you find something in this ramble worthwhile and welcome to the Board - there's a lot of experience here and a willingness to offer support and assistance.

George

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