Newbie Needs Help With Interpreting Results

[johalex]

Hello! My name is April and I am the mother to 6 year old boy/girl twins, one of whom is being tested for Celiac's disease. Alex (my boy) is lactose intolerant as well, but has had chronic diarrhea which had gotten worse over the past three months. It was to the point where he was having it every day, and many soiling accidents, where we ended up testing him at the GI doctor.

Here are the results of the lab tests just sent back to me. Can anyone help interepret these for me? TIA!

 

Gliadin Ab IGG level: 28 H Normal <20

Both IgC and IgA antibodies to gliadin are present in most patienst with celiacs disease (celiac disease). However, the antibodies are not specific for celiac disease. Antibody to gliadin may be present in Crohn's disease, dermatitis herpetiformis, or in subject with no clinical evidence of intestinal disease. In healthy individuals with a family history of celiac disease the antibodies may precede the clinical onset of disease in approximately 25% of the subjects.

Gliadins antibody levels will increase or decrease depending on the removal or reintroduction of gluetn inot the diet. Patients who are IgA deficient develop celiac disease more frequently than individuals who have an intact IgA systm. Therefore, gliadin and transglutaminase IgA antibodies may be absent in patients with celiac disease. IgC antibodies to gliadin are especially helpful in IgA deficient patients

Transglutaminase IGA Ab units: 4F Normals: <20

Trans. Ab (IgA) is present in approx. 95 to 100 % of patients with Celiacs disease. The antibody is rarely found in other conditions. IgA levels will decrease or increase depending on the removal or reintroduction of gluten into the diet. Patients who are IgA deficient develop celiac disease more frequently than individuals who have an intact IgA system. Therefore, Gliadin and Trans. IgA antibodies may be absent in patients with C.D.. IgG antibodies to gliadin are especially helpful in IgA deficient patients. 

[julie5914]

I'm not a doctor, and this doesn't look like a full Celiac Panel, but it looks like your son has gluten intolerance with no intestinal damage - yet. I would try going totally gluten free with him to see if you notice improvements.

[nettiebeads]

I agree with julie. If after three weeks of total gluten-free there is no improvement, I'd seek another answer. And take him off of diary products too, as those are hard for people with celiac disease to handle at first. Hope he's better soon! And if it makes him feel better, I'm 46 and have had soiling accidents too when I've been glutened. My heart goes out to the little guy.

[NewConcerned]

Hi. I'm new on here- I'm a 22 yr old grad student- I wanted to see if anyone could help me make sense of my situation. Over the summer I began having knee pain with cracking and stiffness that got so bad that I couldn't walk well. The dr asked tons of questions and found out that I have had a bad stomach for as long as I can remember- nothing terrible, but just gets upset very often. I had numerous blood tests and everything came back fine, but the celiac sprue blood test came back borderline positive. He told me to try a gluten free diet and then see a gastro dr when I could (he said it wasn't anything to run to the dr for)...well that was about 2 months ago, and i do have a gastro dr appt coming up...I've started having more strange symptoms so I have now been on a gluten free diet for about 2 weeks...the symptoms lessened initially, but they are back now...I have twitching all over my body..mostly my legs, arms-sometimes. When I try to sleep at night I'm constantly woken by body jolts/involuntary sudden movements. THe knee pain has subsided with physical therapy and I'm taking a supplement (glucosamine and condrointin) for joint pain. I'm wondering if anyone knows what "borderline positive" means AND if these symptoms sound like celiac. Any suggestions are welcome!

[Rachel--24]

Your doctor should have sent you to the GI *before* you went on the diet. Now you cannot be accurately tested for Celiac.

It sounds like you could have Celiac. Are you 100% gulten free? How careful are you? You may be getting symptoms from gluten slipping in.

[NewConcerned]

Hi Rachel- I am pretty careful, I think. I have been educating myself by researching about what is ok to eat and what is not. I think I'm doing a pretty good job, but there are things that I'm learning as I go. For instance, I was eating a cereal that was "wheat-free" but I then realized that it has oat flour, so it's not gluten-free. Other than that, I think everything else is ok. Is it possible for someone with celiac disease to not have a horrible reaction to gluten in terms of their digestive system, but have it affect them in other ways? I have noticed that my stomach seems better since I started the gluten-free diet, but it wasn't terrible before. Thanks for your help!

[Rachel--24]

  Is it possible for someone with celiac disease to not have a horrible reaction to gluten in terms of their digestive system, but have it affect them in other ways?

<{POST_SNAPBACK}>

Alot of people don't have the typical GI symptoms. My GI symptoms paled in comparison to everything else I had going on. I didn't really notice or pay attention to the GI symptoms until after almost 3 years of being sick. Thats when I lost alot of weight and started getting really bloated. I get mild cramps occasionally but thats about it...never had diarreah. I went to every specialist (more than once) but was never sent to the GI the whole time I was sick. That was the only specialist I didnt see cuz my symptoms were unrelated. I just finally had my biopsy on Monday.

[Nevadan]

Is it possible for someone with celiac disease to not have a horrible reaction to gluten in terms of their digestive system, but have it affect them in other ways?

<{POST_SNAPBACK}>

YES! celiac disease is only one presentation of gluten sensitivity. There are several HLA-DQ gene types that are more related to neurological symptoms such as you have described. Two suggestions:

You might want to have a DNA test done by Enterolab who checks for a broad variety of HLA-DQ types, not just the primary ones related to celiac disease.

I recommend the book, "Dangerous Grains" by Braly & Hoggan. It has pretty good coverage of "non-celiac disease gluten sensitivity" and its related health problems of which there are many.

BTW, I am a probable case of non-celiac disease GS. The only gastro symptoms I was experiencing were constipation, gas, bloat; however, I have osteoporosis, mild anemia, restless leg syndrone, mild peripheral neuropathy, plus a few I didn't even know I had until they responded to being gluten-free. I self-diagnosed by diet back in June and my gastro symptoms were gone in 48 hrs. I've been gluten-free since. Subsequently I had the DNA test done by Enterolab and found I have a double dose of HLA-DQ1 which make it unlikely, but not impossible, that I have atrophy of villi celiac disease style; DQ1 is more related to neurological problems which I do have. When I accidently get glutened the only thing I notice is a return of my previous gastro symptoms. Thiry years ago (I'm 60) that would probably not have been very noticable.

Good luck with your search for better health. You have come to a good place with lots of folks willing to share their experiences and offer support.

George

[NewConcerned]

Thank you both for helping!

George- so, on the gluten-free diet, have all of your neurological symptoms gone away? I've been on it now for about 2 weeks and I'm still having twitching, jolting, and strange sensations. Do these symptoms go away as you maintain the gluten-free diet?

Also, can anyone tell me what to look for in an ingredient list? What terms mean "gluten" - I know modified food starch is one, what else?

Thanks!

[Nevadan]

George- so, on the gluten-free diet, have all of your neurological symptoms gone away?  I've been on it now for about 2 weeks and I'm still having twitching, jolting, and strange sensations.  Do these symptoms go away as you maintain the gluten-free diet?

Thanks!

<{POST_SNAPBACK}>

My neurological symptoms have not completely gone away. but they are improving. I didn't notice much improvement until just recently so it took about 3 months before I noticed any improvement. From what I read, neurological symptoms are very slow to improve - in fact somewhere I read "not getting any worse is considered an improvement". This is why it is very important to get rid of gluten as early as possible and don't cheat.

BTW, another forum you might like to check out is at Open Original Shared Link . It seems to be more oriented toward non-celiac disease gluten sensitivity. Be sure to check out their "The Gluten File" (second entry you will see on their index).

Hope this helps.

George

[NewConcerned]

Thanks George! That website was very informative- they have tons of articles on the neurological symptoms, as well!

I was wondering if anyone knows about alcohol in the gluten-free diet. From my understanding, any distilled alcohol is ok, like rum or vodka...is that true? I'm trying to find out if I can still go out and have a social drink on my gluten-free diet! Thanks!

[Nevadan]

I was wondering if anyone knows about alcohol in the gluten-free diet.  From my understanding, any distilled alcohol is ok, like rum or vodka...is that true?  I'm trying to find out if I can still go out and have a social drink on my gluten-free diet!  Thanks!

<{POST_SNAPBACK}>

It is generally accepted that distilled alcohols are gluten-free, IF the mfgr doesn't add anything containing gluten for color or taste. I prefer wine anyway which is fine (thank goodness). Beer and other malt based drinks are usually based on barley malt; hence they contain gultens.

George

[Guest BellyTimber]

Some contributors here have reported that distilled wheat etc spirits didn't agree with them, there is obviously a trace of wheat or whichever, inspite of no gluten.

Also alcoholic drinks are not good for compromised intestines or central nervous system, because of the empty calories.

Search & browse old posts on various subjects - this site is a goldmine.

(You'll be 'glued' to the computer for weeks solid)

[NewConcerned]

Hello,

Does anyone know if vitamins are gluten-free? Or, how to tell if they are? I have been taking a multi vitamin and glucosamine/chondroitin now for a while and I'm wondering if they may have gluten in them.

Also- has anyone had headaches with blurry vision or know if this is also a sign of celiac disease? I'm still getting used to the idea that an intentinal problem can show neurological symtoms- crazy!!

[Guest BellyTimber]

Second question first - yes. Can also be symptom of lots else. In some quarters it is thought compaints affecting different parts of the body are more often interrelated than used to be thought. The gut-brain connection is being mentioned in more books of late.

First question second - you should investigate this two ways.

In the products and shopping part of the forum this may have been dealt with over the last few years - keep clicking back and back. Also use search from the little link near the top above My Assistant.

Every bottle should state on it all the ingredients. Even if it doesn't say "no wheat, no gluten" one should be able to deduce it, though the researching can get more like a detective hunt that way, due to technical wording.

In the UK, starch or modified starch must always be described as being from a specific crop and I believe the US has just introduced that?

On the other hand, again in the UK, flour, malt, glucose, dextrose, maltodextrin and several other terms are assumed to be from wheat (or, in case of malt, barley) unless the name of another crop is added. A new rule in the UK soon will mean products will still need to carry a declaration "contains wheat" if it is most wheat products but will be exempted from carrying it for the last three mentioned above.

Celiac and similar patients will vary in their sensitivity to some of these substances so some may choose to have them but it's best to equip oneself to be able to see whether it is a relevant issue for one.

One may not be able to tell for some time what one reacts to so gradually place yourself in a position where you can fine tune what you do at a later date.

The main lines are the most important - how are you going to shop, eat and cook.

Many of our contributors to this forum have given out lists of ingredients and/or products, so keep browsing, and ask them in various appropriate sections of the forum.

Also the main site has a wealth of valuable info. for you.

George, your perspective on nerve symptoms is interesting to me as I'm 50, apparently I've become more relaxed over the last 2 years but got worse shaking, ear pain etc. as well as continuing digestive problems.

I think the moral of the tale is, to settle in for a long haul.

[NewConcerned]

Hi everyone- I just got the specifics on my blood test- my Antigliadin IgG was borderline positive- but my IgA was within normal range. What does this mean??