Can Antibodies tests be initially negative and months/years later be positive for LADA?

Type 1 and LADA
#1

Can the antibody tests to diagnose LADA/Type 1.5 be initially negative and months or years later be re-run and come back positive?

I know that the Rheumatoid factor for Rheumatoid Arthritis can change over time from negative to positive indicating that your RA is getting progressively stronger--definitive that you have RA.

I already have two autoimmune diseases and one disorder--Graves diseases(now hypothyroid), Rheumatoid Arthritis (found during a severe allergy attack).

The reason I am I asking is because when I saw my doctor two weeks ago, I had lost almost 40 pounds but my AlC was 6.4. At the time I was not having any diabetic symptoms and feeling good.

Last week, I started feeling really bad, but I just blew it off as it is time for my RA Remicade infusion. Really fatigued, thirsty (can't get enough water), sleepy, hungry but nauseated at the same time, feet and abdomen swollen. Eating and losing my entire lunch or dinner 30 minutes afterwards.

When I would check my blood it would be around 87 - 89 or 103, but I would be so shaky like I was having a hypoglycemic reaction and needed sugar.I had to eat a candy bar because I was losing vision and sweating.

There is a strong genetic link for diabetes in my family on both sides--mother, maternal grandparents, parental grandmother (who also had thyroid and RA diseases).
#2

Hi Kate: With symptoms like that, I would see your doctor ASAP. Just my 2 cents.

#3

Thank Melitta. My endo diagnosed me as Type 2 in August and says that I'm not Type 1, but I was wondering if I should be retested. He seemed kind of concerned since I'm losing weight but my A1C is going up 6.4 instead of down 6.1 previously. He suggested Victoza but then said he would wait a little longer. I couldn't take Metformin or Metformin Extended. Both made me ill and I was constantly in the bathroom with stomach cramps.

#4

I would definitely go to your doctor right away and have testing for antibodies again as well as a full cbc and physical etc. Have you tested for ketones? I think your bg would be much higher if you were going into dka. Mine was 279 at diagnosis and I was already in dka then(250 is usually the start of dka), with 160++ ketones, 1000++ urine, 100++ protein, plus vomiting, trouble breathing and all the other symptoms. The first dka can be a gradual process, but usually bg will be higher when it starts. There could be some other reason for your symptoms.

#5

The PCP did a urine test in May and found sugar spillage in the my urine. When I was referred to the endo in August my sugar in his office my BG was 268. He requested a 24 hour urine collection and he said the tests came back fine. Basically he said he was looking at my kidney function. He hasn't requested another one since.

#6

A BG of 268 mg/dl is nothing to blow off (my meaning, your doctor should take that seriously). Again, I do hope that you will see your doctor ASAP.

#7

I agree, 268 is high. Did they test for ketones? You can do that yourself, just buy some ketone testing strips at walmart/target. It sounds like you could be heading to dka to me so I would redo all the testing as well as check for other possible causes. Are you on metformin? I think many type 1 who have been put on metformin or other oral meds find it doesn't help them effectively control bg and their a1c keeps going up as insulin production drops. If you get any symptoms like vomiting, trouble breathing, ketones, high bg go straight to an er.

#8

I agree Melitta and Meee. I am not sure if they checked for ketones. I thought they did, but I can't be for certain, it's been a while now, and I haven't had another urine test. Since I've got to pick up diabetic supplies for Mom this evening at the drugstore, might as well pick up some ketone testing strips as well. I vaguely remember as a little girl my grandfather using them.

I tried both metformin and the metformin ER and both made my stomach problems worse. I already have infrequent stomach dumping and the metformin made it a regular occurrence. The endo was puzzled (and still is) by this because I cut out all starches at the request of my cardiologist way before I was ever diagnosed as Type 2. No starches should mean lower A1C for a Type 2 right?

The only other explanation is my RA medications--the prednisone which I've also reduced drastically to maintenance level. I did bloodwork today to see where my RA is--I can tell the monster is rearing its ugly head again--joints aching and swelling--means lots of inflammation.

Since my body already has auto-immune issues (i.e., self loathing--Graves, allergies (food/sun/grass,etc.), and RA) might as well throw diabetes in the mix.

#9

Hi Kate,

I think it would help to reduce starches in most cases, I guess it is all very individual and it depends on what meds you are on and how you respond to them. Did you test for ketones? I would see if you have any the next time you have a high bg reading. You have two autoimmune diseases so that makes it more likely to be type 1 imo. Sorry if I missed this but are you on any meds for D now? I hope you get this figured out soon. You're having a lot of symptoms which sound pretty confusing to me. But if you get all those symptoms plus, vomiting, ketones and trouble breathing etc. this is an emergency so please treat it right away.

#10

Meee, no I'm not on any diabetic meds right now. Just diet and exercise and I have to be careful with the exercise so I don't trigger an RA flare. My is very picky, just from walking in flat shoes will trigger a flare up of plantar fascitis.

The endo said we will revisit in 3 months (August) but no bloodwork in the meantime. He's pushing for Victoza, which I may say yes to because I don't feel great. I'm holding strong to my diet, but the swelling is creeping back into my feet, ankles, and legs. I think it was wishful thinking on my part that I wouldn't need insulin.

The rheumy, cardiologist, and endo are all pointing fingers at each other about the fluid retainage. My mom says it's the diabetes--she, her mom, and her dad's side of the family showed this sign promptly--and all were put on oral meds that did not work, and then switched to insulin right away. When she was placed on insulin she no longer had swelling. She said she felt 100% better. She takes Lantus for Breakfast and Novolog for meals.

Dad and I discovered her acting strangly at breakfast one Saturday morning--just sitting, staring blankly, not eating, when we rushed her to the ER her BG was well over 300.

I'm keeping a close eye on things--I've got my meter and my ketones strips. I had trace ketones today and they increased a little as the day went by--which is how the symptoms progress.
Tomorrow is my infusion, and I really want to test to see how much I go up.

#11

I'm glad you're testing so you can see what is going on. Ketones is not a good sign. I would go on insulin, not victoza. Victoza has been linked to nasty side effects including pancreatic cancer I think. I have fybro and I have to wear padded shoes/sneakers with really soft soles, this seems to help all of my pain a lot. So does drinking some red wine at night with dinner.

#12

My initial tests were negative, then I had positive tests and the latest test came back negative.... interesting huh?

#13

Very interesting indeed AskHealthy. Did the doctor give you any reason for conflicting results?

#14

Hi there,

I've been told that 'that just happens sometimes' and I've also been told it is probably due to my strict diet: gluten and dairy free. I'm not sure! I should take more tests to see if there is any pattern.

#15

Kate and Ask Healthy,

Have either of you been tested for Celiac Disease? I have that and Hashi’s. My thyroid antibodies have come down after going gluten free (which is the “cure” for Celiac Disease) I have not had antibody testing for diabetes yet since I am maintaining good control with diet (my doc and I agree that treatment is the same at this point). There is a definite link (genetic between the three, for sure, and other autoimmune disorders like RA and lupus.

I can only guess that by controlling or calming down the immune system for one or more autoimmune disorders (like celiac disease) that it would calm the antibodies for diabetes.

#16

Cyclinglady, No I haven't been tested for Celiac Disease, but my mom's side of the family definitely has digestive problems. But back in the day they just lumped everything under IBS and of course my grandmother and uncles never went back to get tested. My mom and her siblings have symptoms that could be classified under Celiac. One uncle sometimes had to miss events due to stomach issues and had to be careful of what he ate.

My mom had digestive problems many years prior to her diagnoses of diabetes. The doctors kept eliminating foods from her diet to no avail. But once she was diagnosed, the digestive problems lessened. She still will have an occassional bout, but nothing like before.

As I'm sitting here typing, I just had lunch and my stomach is so angry with me. I didn't have any carbs, only protein, but I guess it's still angry about the accidental consumption of dairy/soy yesterday.

My main issue is getting someone to do the testing.

#17

Any GP/PCP or even your GYN can order the celiac blood panel. Check out the University of Chicago’s Celiac website. There is a list of over 300 symptoms related to Celiac Disease.

My Gastro caught the diagnosis, during a consult for a routine colonoscopy. My ONLY known symptom was anemia. I am the first in my family to get a formal diagnosis. The rest either have Grave’s, lupus, Hashi’s, RA or Fibro.

Ingestion of gluten for a celiac triggers an autoimmune response that can last for weeks. Continued exposure can cause severe damage. I was undiagnosed for years! My anemia has resolved, but I am dealing with Osteoporosis now (fractures).

Type 2 diabetes does run my my family, but there is a chance that I can develop type I. My doctor and I are are monitoring it. I am managing with diet and eating to my meter.

Hope this helps. After 20 year,s with Hashi’s and waiting for another autoimmune disorder to appear, I never would have guessed about celiac disease. Now, I am waiting to see if type 1 develops. But, like everything else, I will deal with it!

#18

Good to know thanks Cyclinglady.

Wishing you the very best!

Kate

#19

Hi,
I was found GAD positive (#34) about a month ago. I am on gluten free diet since 1.5 years but I feel I am intolerant to milk as well. I have eliminated milk /cheese from my diet since last 1 month.
I am interested to know you experience about it. What was your GAD level and after being free of GAD is your blood sugars better.
Looking forward to your reply.

Thanks

#20

Hi rahul_boston. I have Celiac Disease (and Type 1 D), so of course I eat totally gluten-free. I find that if I take a good probiotic capsule early in the morning, I am not lactose intolerant; without the probiotic, I am. Btw, there should not be any lactose in hard cheese.