Just Need Advice To Take To Doctor

[eccooke]

I am 30 years old with a family history (maternal grandmother, mother and maternal aunt) of celiac disease. I have not been tested because any doctor I have gone to will not test me for it. I have many symptoms associated with celiac and have pretty much self-diagnosed. However, some of these symptoms are getting pretty scary. My list of symptoms are as follows:

chronic fatigue

no menstruation

chronic bowel problems (5 or more bowel movements a day and all of them are semi-solid and full of fat)

muscle aches and weakness

irritability

anxiety and depression (comes and goes)

the feeling of my heart constantly beating in my throat

constant hunger but afraid to eat because ANYTHING I eat causes upset stomach, gas, cramps, worse fatigue, nasty bowel movements

dry mouth (almost constant)

weight gain for no reason

bloating

I am 5'5" and 165 so I am classified as "overweight" however, when I exercise I am completely fatigued and cannot move for the rest of the day. I'm pretty sure that I have celiac and want to get tested but there are some symptoms that also show a thyroid problem. For the last 15 years I have had my thyroid tested over and over again because the doctors are sure that the symptoms show a thyroid problem, but when the results get back I have a normal thyroid panel. The last time I went to the doctor I had to demand another full hormone panel and vitamin panel. The hormones were normal but I was severely deficient in vitamin D. I now take 5,000 IU every day of vitamin D but do not feel any different. Like I said earlier, I self-diagnosed myself with celiac and have been on a gluten free diet for 3 months now but only a few symptoms have subsided. (anxiety and depression, and some bloating) I read about a disease that is commonly associated with celiac "autoimmune thyroid disease" and would like to get tested for it but I am unsure what to tell my doctor and what to demand. I just need some advice about celiac and autoimmune thyroid disease. If the symptoms I listed fit with those or if it is something else. Thank you very much!!!

Eccooke

[eccooke]

Another symptom is the mental fog or almost short-term memory loss. Its almost like I lose track of the day because I can't remember what I did or it feels like what I did was so long ago. My husband tell me its almost like I "blackout" several times a day and my brain is so foggy that I have trouble remembering and concentrating. This symptom has come up in the last year or so and has gotten very scary in the last few months.

[melikamaui]

There are a lot of people here who are self diagnosed. You can choose to stop eating gluten whenever you want. If you take gluten out of your diet and feel better, who cares if you're diagnosed or not? It sounds like you are really suffering and looking for answers. The answer could be right in front of you. Go gluten-free and see if it helps. And I totally agree, you sound like you have celiac disease. Best of luck to you!

edited to add: Just re-read your post and see that you have already gone gluten-free. Good for you! Hopefully it will help over time. I think you did the right thing.

[Sarah Alli]

Ew, get a new doctor asap. Seriously- to refuse to test someone with an extensive family history? That's bordering on malpractice.

That said, if you've been gluten free for three months, you're probably going to get a false negative on a test. You have to be eating gluten for those things to come back positive.

Maybe take another look at your diet. How strict are you being? Do you ever eat out? Are you exposed to a lot of gluten at work? Have you replaced your toaster, cutting boards, scratched nonstick pans, anything with a rough surface that's come into contact with gluten? Does the rest of your family eat gluten, and if so does your dear husband brush his teeth before kissing you? Is your toothpaste, mouthwash, chapstick etc gluten free? Do you eat oats or anything out of the bulk bins? Is your vitamin D gluten free?

Sadly, even if you're doing it perfectly these things really take time. I didn't see any real results until about 2 months, and I'm still far from 100%.

Try keeping a food diary and see if you can tie your symptoms to anything else in addition to gluten. There are lots of people around here with sensitivities to other things- eggs, nightshades, soy, etc. Lactose intolerance is pretty common in celiac too because of the damage done to your small intestine and it often clears up as your gut heals. Look for other things that might be contributing too- I find I simply cannot have fried or greasy food. Pizza, french fries etc give me stomach cramps even if they're for sure gluten free. Somehow, I don't feel like I'm missing anything!

You have family members that have been through this. Use them- they're a good indicator for you because they're genetically much more similar to you than random people here on the forum.

Best of luck!

[JoshB]

That's very strange, but you know that you can just order the test yourself, right? There are a number of testing companies that will work with you rather than your doctor. The downside is that you won't have any insurance reimbursement -- cost is about $250.

[rosetapper23]

Yes, your symptoms are very consistent with celiac. I'm worried about your B vitamins--have you been tested for Thiamine and B12 deficiencies? Deficiencies in these vitamins can cause memory problems, diarrhea, and fatigue. Also, you should definitely get tested for iron anemia. The fact that you're not having periods AND you're having memory problems leads me to believe that you're not adequately absorbing hormones, but this may improve the longer you go gluten free....but it's essential that you be absolutely 100% gluten free.

I believe that the thyroid condition you're referring to that a number of celiacs can develop is Hashimoto's Thyroiditis. However, your thyroid panel should indicate a hypothyroid condition if you were suffering from this disease. Is there any chance that you're borderline hypothyroid? If so, perhaps you could convince your doctor to place you on a low dose of medication. However, if he refuses to even test you for celiac when it's obvious that you should be (since you have a first-degree relative who has celiac), I'm not sure how flexible he would be about that. I second the suggestion that you get a new doctor PDQ.

[pricklypear1971]

The thyroid test for Hashis is TPO. It is NOT standard. What were your results for t3? Most normal ranges are .5-5.5. Good thyroid docs say optimal is around the 1's.

Visit about.com thyroid section for good, free advice and how to arm yourself before going to the doc.

It may be worth it to go to a Naturapath, who will have pity and order the tests. If you have a ppo there's a good chance they will pay for the labs but not the office visit. Well worth it.

A NP can also order genetic testing for Celiac and you can order your own test from Enterolab.

[eccooke]

Thank you everyone! I really appreciate the support! I made a doctors appointment for this Thursday and from all of your posts I feel confident that I can take my research and your answers to the doctor and if they don't want to do the tests, I'll go to a different doctor. I have not been as strict as I probably should be with the gluten...I really didn't know much about the cross contanimation and wow...my husband and son are going gluten free too!!!! My husband is very supportive and does not mind the gluten free bread...he actually notices a difference in his body when he does not eat gluten!! My 2 year old son (yes he is a miracle baby!!) has alot of respiratory problems that may very well be associated with gluten...so it is probably good for him to go completely gluten free too! I will keep you all posted on what the doctors say on Thursday and if I am going to need a different doctor or not. Once again, thank you for your input. I am very desperate to find an answer to the problems I have been having for almost 2 decades.

Eccooke

Also, I am going to ask the doctor to check my vitamin B panels and thiamine like rosetapper23 asked...I'm not sure what my last vitamin panel said besides that I was low on vitamin d. Stupid me did not ask for the print out. This time I will ask for all of the print outs and post them here when I have them. My thyroid panel showed normal for the doctor, maybe it was not normal for someone with celiac. And pricklypear1971...what do you mean about the test for Hashimoto is TPO? Also..forgive me for being naive but what do you mean about my results for t3? I will go to the website you requested and find more information before the appt on Thursday.

[GlutenFreeManna]

Like I said earlier, I self-diagnosed myself with celiac and have been on a gluten free diet for 3 months now but only a few symptoms have subsided. (anxiety and depression, and some bloating) Eccooke

Since you have been gluten-free for 3 months blood tests and biopsy for celiac will likely be false negative. You would need to go back to eating gluten in the equivalent of 3-4 slices of bread per day for 3 months in order to get the blood tests and have a chance at accuaracy. Even then they could be false negative. Best to just keep on with the gluten-free diet if you think it is helping you. As far as your symptoms that have not gone away since you went gluten-free, there are at least 3 common possible causes:

1. Cross contmination or hidden gluten is still getting you. Re-check everything (even personal products) and make sure you are strict--no shared toasters no gluteny kisses from loved ones, etc. You may also find you need to go to eating only whole foods and cut out the gluten-free subs for a while.

2. You have other intolerances besides just gluten (common ones are dairy, soy, corn, night shades, eggs). Sometimes these show up after goign gluten-free but are temporary, sometiems they are intolerances to things you start eating more of once you go gluten-free. It's good idea to keep a food and symptom journal if you suspect other food intolerances (or can't figure out a source of cc).

3. You have another condition like a thyroid condition or vitamin deficiencies. Ask for retesting for the thyroid. Most insurances will allow you to be tests once or twice per year, especially with a family history. Be sure they do a full panel and also request a copy of the results yourself so you can see the tests they ran and the numbers.

[pricklypear1971]

TPO is a specific test for an antibody that shows your thyroid is being attacked by an autoimmune disease. Not all hypothyroidism is caused by Hashimotos.

Sorry, should have said TSH not T3 - although there are t3 tests (see about.com).

[Sarah Alli]

This time I will ask for all of the print outs and post them here when I have them.

No idea where you live, but in the US you have a legal right to a copy of your lab results- something to keep in mind if for some bizarre reason your doctor pushes back.

The medical group I use has their own online database, and I can log in and view all my test results at any time. When I have more tests they are automatically uploaded and I am sent an email- I can also use this to communicate with my doctor in non-urgent situations. I'm sure they are not the only folks that do this so if you end up needing to find a new doctor, it's worth asking about.

For what it's worth, I think you should focus on getting all the gluten out of your diet before worrying overmuch about additional food intolerances. I cannot stress how important it is to make your household gluten free- my home is my safe haven, I can eat everything in it without fear and that's very meaningful from a psychological standpoint when facing diet restrictions. If your husband is anything like my sweetie, he'll do fine on gluten-free- mine refuses to eat any gluten around me, even though it wouldn't make me jealous, because he "wants to be able to kiss me." And I'm sure he eats gluten when he's out by himself- we have a don't ask, don't tell policy as long as he brushes.

[eccooke]

Well I got my results back yesterday and the antibody test (IgA and IgG) showed <1.2 and I believe the normal range on these are <4.0 and <6.0. So the antibody test showed that i do not have celiac....but my mother is still convinced that I do and the doctor wants to do an endoscopy and colonoscopy to confirm. However, it does show that my thyroid is low with the results of (forgive me I really don't know how to read these) T3 total at 99...T4 free at 0.95...TSH at 1.17. The doctor said that these thyroid tests are within range but on the low side. I also noticed (the doctor never said anything about these) that my MPV, %MONO and %EOS is high. I've tried to google that and it has to do with my immune system. Anyways, I have the endoscopy and colonoscopy on Oct. 3rd and I have a pelvic sonogram later today to see why I have not had a period in 8 months. If anyone has any advice let me know or if anyone knows how to read a lab report better than I do let me know!! Thank you all!