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Mild celiac disease With Major Symtoms?

Stillsick09

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Stillsick09 Newbie
Stillsick09
Posted

So I was diagnosed with a "mild" case of celiac disease last June 09, but I have been horribly ill for 25 years. My doctor did a blood test and I had an Ttg level of 12.9 and a negitive small bowel biopsy soon after.

Since I was a baby I have had GI issues and have consistantly thrown up at least once a day for 25 years. I have had just about every GI symtom you can have and continue to after following a strict GFD for 5 months. I am also overweight and cannot seem to lose it.

I have talked to several other celiac's and not one has had as severe symtoms as I have with a "mild" case. Also, most felt much better after being diagnosed, while I have seen little changes in my symptoms.

My question is, is it possible to have a mild case and be so sick?

Is there other conditions that cause the tTg antibody to be elevated besides celiac disease?

If anyone knows of this or has any advise for me, please help. I am 25 years old and fed up with this condition and I don't want to suffer anymore, expecially if I don't have to..

Please help

Shelby :(

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mushroom Proficient
mushroom
Posted

Welcome to the forum, Shelby.

I don't know about having a "mild" case of celiac; that's a bit like saying you are mildly pregnant! I think it just means that the testing is not measuring how sick you are. I know you do not want to throw up, but do you think it is something that has become entrenched somehow?? This is certainly not normal. Are you still throwing up? What do your doctors say about this?

Progress in feeling better on the gluten free diet varies from person to person. If you have been suffering for 25 years. even though you don't appear to have villous damage, it may well take a while to get a significant difference.

As far as I know tTg is pretty specific for celiac, although?? I seem to recall someone posting something to the contrary somewhere. Have you been checked for Crohn's Disease, interstitial colitis??? I am afraid I really don't have a lot to offer here. I hope someone else has some other ideas. I hope you get some answers and/or get to feeling better soon.

Wolicki Enthusiast
Wolicki
Posted

Shelby,

I am sorry your not feeling well. Isn't "mild celiac" like a "little bit pregnant?" :D I am not a doctor, but I think you either have it or you don't.

Have you checked everything for gluten? Cosmetics, lotions, soaps, toothpaste, etc? You may be still reacting because you are getting gluten this way. Also, have you done an elimination diet? It may be that you have other intolerances that are causing the problem. There are several good threads on this site regarding elimination.

Have you also had all your vitamin/mineral levels checked?

Be well,

Janie

Korwyn Explorer
Korwyn
Posted
So I was diagnosed with a "mild" case of celiac disease last June 09, but I have been horribly ill for 25 years. My doctor did a blood test and I had an Ttg level of 12.9 and a negitive small bowel biopsy soon after.

Since I was a baby I have had GI issues and have consistantly thrown up at least once a day for 25 years. I have had just about every GI symtom you can have and continue to after following a strict GFD for 5 months. I am also overweight and cannot seem to lose it.

I have talked to several other celiac's and not one has had as severe symtoms as I have with a "mild" case. Also, most felt much better after being diagnosed, while I have seen little changes in my symptoms.

My question is, is it possible to have a mild case and be so sick?

Is there other conditions that cause the tTg antibody to be elevated besides celiac disease?

If anyone knows of this or has any advise for me, please help. I am 25 years old and fed up with this condition and I don't want to suffer anymore, expecially if I don't have to..

Please help

Shelby :(

Hi Shelby,

I know that some of my issues turned out to be additional allergies and severe intolerances to casein (milk protein), and soy (in any form). Soy is in almost as many things as gluten. When I first went gluten-free, I felt good for a few days, but then gradually started feeling worse. As my system began healing a little bit from gluten reaction I started to notice reactions to other things that were masked by my celiac symptoms. It was very difficult because for quite a while I thought I was getting glutened somehow since so many of the symptoms were the same. Over the last 7 months I've been able to group most of my symptoms and figure out what causes which, but some of them do overlap.

For me, the vomiting and upper GI/stomach was actually being caused by casein. The lower GI, headaches, joint pain, and fatigue were being caused (mostly) by gluten and/or nightshades. The CNS, neuro-muscular, depression, panic attacks, anxiety, and insomnia were being caused almost exclusively by soy, though the nightshades (especially peppers more than tomatoes) do trigger some of the CNS stuff for me. The brain-fog I get from any of the three (gluten, casein, soy).

However it turned out that the soy and casein were actually making me sicker (outwardly) than the gluten, but it was all gluten caused originally.

nmlove Contributor
nmlove
Posted

Just wanted to say that the ttg test is pretty specific but there's still 5-10% chance it's not celiac. My son's GI told us this. He didn't go into detail what other conditions could be a problem but this is what he did say. If my son's endoscopy was negative (it wasn't) he would do a genetic test to rule celiac in/out. If he was negative, he'd still have to go gluten-free for 3 months, get retested and see if that helped. I know this isn't specific but it does mean that something else could potentially be going on.

But I so relate to the other food intolerances! My two sons are the gluten-free ones in my household but I've had issues with food since the birth of my third child. I pretty much went on an elimination diet (unintentionally) while pregnant just because nothing sat well so I was down to mostly fruit and meat at the end. And now that I'm trying to eat more variety it's amazing what reactions I'm getting! And it's been over 5 months since her birth and I'm still trying to figure it out! The best advice, though it's a pain, is to keep a food log. Write when/what you're eating as well as when you experience your "issues." Then look back and cross reference.

ang1e0251 Contributor
ang1e0251
Posted

What's your diet like? What symptoms do you still have? Maybe we can help.

Mtndog Collaborator
Mtndog
Posted
My question is, is it possible to have a mild case and be so sick?

Is there other conditions that cause the tTg antibody to be elevated besides celiac disease?

If anyone knows of this or has any advise for me, please help. I am 25 years old and fed up with this condition and I don't want to suffer anymore, expecially if I don't have to..

Hi Shelby- Welcome! As far as I know, it's what everyone above said. You either have celiac or you don't- there may be minimal damage visible in a biopsy but if you have positive bloodwork, that's all you really need. You're "lucky" in that there are FAR more false negatives than false positives.

It's been 5 months but like others said, it takes awhile to heal and many of us find that in the beginning (and sometimes permanently) we have to eliminate other foods. I had to get rid of dairy then soy then all legumes. Now, I'm happy to say I can eat everything but gluten.

The throwing up is something I can identify with. I had a year in college where I threw up after EVERY meal. Mine turned out to be acid reflux. Then it reared its head again and I found out I had a panic disorder. Then (yeah- I know) after both of those were treated, it came back in my 30's and was really bad. It turned out I had Lyme Disease.

I don't know why you've thrown up every day for 25 years but you have to get it checked out- it can cause major esophagus damage as well as strip your tooth enamel.

I'm so sorry you're feeling so bad. Hang in there- people are great here and you will find a lot of support!

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Korwyn Explorer
Korwyn
Posted
... I'm still trying to figure it out! The best advice, though it's a pain, is to keep a food log. Write when/what you're eating as well as when you experience your "issues." Then look back and cross reference.

One of the problems I had with a food log was that I didn't realize that you can react to foods any time from ingestion and up to four days later. So my initial attempts at an elimination diet were non-productive and frustrating to say the least. Then I had started getting detailed on the ingredients in the foods and that became impossibly overwhelming. So I dropped back to a paleolithic diet (non-processed meat, farm eggs, and non-commercially processed (fresh) veggies and some fruits). Then I was able to begin actually identifying offenders. Once I found a stable diet that I stayed on for about 2 month that produced a continual improvement of various symptoms I started testing and eliminating various food groups and then individual foods within those groups. Nightshades for example. I can eat potatoes (once or twice a week), and an occasional tomato, but no peppers of the chili family. Bell peppers are OK, but eggplant is out. Processed corn (cornstarch, corn syrup) is pretty much a no-no but fresh or frozen corn is OK. Stone-ground corn seems to be alright in moderation but it is has been heavily baked (some commercial tortilla corn chips) it seems to give me problems if I eat too much.

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