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How Important Is The Biopsy?

kaysol

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kaysol Rookie
kaysol
Posted

I am FINALLY meeting with a GI Dr. on Tues after waiting over a month to get in.

all 3 of my blood tests came back positive for celiac. My meeting Tuesday is just a consultation - they wouldnt even let me schedule the biopsy until I meet with him. I am so worried that it might take another month to get the biopsy done and I am getting sicker by the day. The past 3 weeks have been terrible, my stomach keeps gettting bigger and bigger (I actually look pregnant), I go between terrible consipation and then to diarehha and wake up at night with horrible pains in lower intestines. I guess my question is, if they can't get me in any time soon should I just say forget the biopsy and go with the blood test diagnosis? Could anything else make the the labs posative other than celiac? I am hating that I have to eat gluten and knowing that I could feel so much better. I feel like my life is on hold and I am so scared that something else could be wrong due to the disstention and horrible pains. My numbers on the blood work were all very high (IGA was 144 and my IGG was 111 and the other one was positive although I don't know the #'s also my cholesteral and iron were very low - 150 and 8). I am trying to prepare myself for the possibility that I might be told I have to eat gluten for another month or longer and I am wondereing if I would be safe saying forget it. Can these numbers mean anything else? I am so depressed and scared right now. I didnt really have many syptoms until recently but I feel like I keep gettting sicker by the day. Any advice would be much appreciated!

Thanks!

Stephanie

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Guest jhmom
Guest jhmom
Posted

Hi Stephanie, I am sorry you feel bad and are still going through the diagnosis process. It can be hard to make decisions about our health especially when we feel bad and just want to feel better. We trust our doctors and what they recommend but if it were me and my blood tests came back positive I would not go through with the biopsy, I would immediately begin the gluten-free diet. One thing to think about is sometimes blood test can be positive and biopsies can be negative and vice versa, so just keep that in mind.

Feel better soon :rolleyes: Take care

tarnalberry Community Regular
tarnalberry
Posted

It's a personal decision. I am not biopsy diagnosed, but my doctor was willing to go on inconclusive blood tests and positive dietary challenge. But it's really a personal decision. You might have very little intestinal damage (though I'd doubt it from the low iron count), but at the least the blood tests say your immune system reacts to gluten.

SteveW Rookie
SteveW
Posted

Going through the diagnosis process is not fun. It took me around 3 1/2 months of hell before I was confirmed to have Celiac Disease. But I also had a colonoscopy and was told I had some irritation in my colon and that I might have Crohns as well as Celiac. Turns out that I do have a mild case of Crohns. So I guess I'm saying in my case it was worth to get the biopsy. If you choose to go with a biopsy make sure that you get a colonoscopy at the same time. All these intestinal disorders have similar symptoms so the best way is to go in and check them all out.

CarolynM Newbie
CarolynM
Posted

Weighing in on the "skip the biopsy" side! With only positive antigliadin, we reluctantly went with the doc's recommendation and did the biopsy. ( I was ready to try gluten-free seeing obvious reactions to pastas, pancakes) It postponed getting by daughter healthy by nearly 3 months.

After waiting for an appointment then the biopsy. We were told everything was completely within normal range after the biopsy. She got worse and I decided to go gluten-free without the doc. It took only 3 days to see improvement - solid stools and sleeping much better. Now a month later, I wish I had skipped the anxiety of the biopsy and the $6000+, and still coming, in medical bills that thankfully, our insurance is paying 80%.

I say try your own test with a gluten-free diet. You can always go back to the doc for tests if you don't improve.

ryeanddiet Rookie
ryeanddiet
Posted

Hi Stephanie

I'd vote for 'get the diagnosis'. Several on the board have gotten relatively quick tests from enterolab and had the results accepted by their GI/GP, if your Dr won't confirm the diagnosis just with the blood test, ask if he/she would accept this.

I don't have that option living in Canada. I had positive blood so went gluten-free only (I felt better than I ever have in my life, all symptoms disappeared, all anemias turned around) to have the GI tell me 8 months later they wouldn't confirm celiac without the biopsy. I want the formal, medical diagnosis so Dr's will keep an eye out for associated illness, my children will get tested, etc.

I'm now back on gluten in preparation for the biopsy and am more sick than I was before. I know it's not fun but my opinion would be to get the diagnosis (unless you don't care and it's unbareable, in which case try to find a more sympathetic Dr and go gluten-free).

If your GI insists on a scope, there may be options. I'm paying to go to a higher end private clinic just so I don't have to wait the 9 months for the appt (I'm in Canada, public health care takes longer).

Best of luck. Fingers crossed.

jen

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
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    • Wheatwacked
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      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
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      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
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      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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